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Patient's Stories - Real life testimonies for help and inspiration PDF Print E-mail
Resources 2 - World Wide Resources
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Berrutha Harper - Parent and Actor Danny Glover at the Georgia Comprehensive Sickle Cell Center

Sickle Cell Disease can affect ANY race! My name is Vikki and my husband and I am a Caucasian couple with 2 beautiful boys that have from Sickle Beta Thalesemia Plus. I am of Italian decent and have a thalesemia trait. When I was pregnant I was tested and my doctor wanted to test my husband for it as well. I received a call several days later that he has a sickle trait. I said "No way! My husband has blonde hair and blue eyes." We thought at the time that this disease was only a black disease. We now have 2 sons that have sickle beta thal plus, one with blonde hair and blue eyes. We are expecting our third child and will not know until after she is born if she also has the disease. We were told that this disease is a more mild form of Sickle Cell and can but usually does not experience the same problems that someone with SCD does.

Unfortunately our oldest, 4 years old, has experienced severe crisis in his back and legs. We have spent time in the hospital due to the crisis and fevers. Our youngest, 2 ½ has only had his hands swell with mild pain. I think that was what the doctors tried to prepare us for, not what our oldest experiences. When I am watching my children run and play it is always in the back of my mind if it will cause a crisis for him. Is he over doing it? Is he going to dehydrate? Hydration is the biggest factor for us and is what saves us at times. Although they have sickle beta thal plus, we still live with this disease EVERYDAY!

everytimeilookupinfo

Every time I look up information on the Internet, look at brochures, books and etc this disease always shows an African American person. I understand that this disease is most common among the race but I want people and society to know that this disease CAN AFFECT ANY RACE!

My two children both with Sickle Cell Disease type Sickle beta + thalassemia

Since I began writing this letter my youngest came down with a virus with symptoms of a fever only. Had him checked out but the next day he was very irritable and pale. I called the doctor at about 4:45 when he woke from a nap very lethargic and I noticed him falling over a couple of times. I brought him in to the Children’s Hospital as advised by his doctor and his hemoglobin was down to 4. His normal is about 9.2-9.5. We experienced our first blood transfusion and he has been tested and confirmed to have been affected with the Parvovirus which I was not aware of. My next son became sick on Dec 8 for only 2 days but on the 12th woke with stomach pain and slight paleness. None of this was uncommon for him after being sick. At night I gave him a bit of Tylenol with codeine for the pain and he woke at 10:15 acting very "strange". He punched at his stomach and was not able to stand. I paged the doctor but during the day I spoke to the Nurse to let her know about him and told her he was playing but was just a bit tired with mild pain to his stomach. He said to bring him into the ER for a blood test. I left immediately and thank God I did. By the time I got to the ER his lips were blue! He went into resripitory arrest and he had splenic sequestration. His hemoglobin dropped down to 1.8! Yes….1.8!!! Doctor said he has NEVER seen that and the next few hours for him were critical. Here my son is in PICU on a ventilator and my husband and I are told is very critical. WHY!! Because of a virus—Parvovirus. My son was in PICU for 18 hours and moved to the Oncology room for 2 ½ more days. He amazed his doctor and he told me along with every nurse that was there that he is our Miracle baby!!! My children are affected by this blood disorder and we almost lost both of our children from just a childhood virus! THIS DISEASE DOES AFFECT ANY RACE! Today though they have both fully recovered and doing very well. I encourage everyone to find out all they can about this disease (SC). I heard of the Parvovirus but did NOT know that a simple childhood virus could of taken our children from us!

Again, I want people to see other faces of people who suffer from this disease and to let everyone know it is NOT only a black disease. It can and it does affect ANY race!

 

Vikki Glarum   Contact: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 


My name is Silvia and although it pains me to read that your two sons have this unfortunate disorder, I was surprise to read about them, because they are white....like me....and yes we can have sickle cell just like any African American. Different maybe, but sickle for sure! 

I am 41 years old, White Female, Italian, Mother & Father from Sicily, and I too have Sickle Beta Thal.  I have been under the care of this great Oncologist here in Houston and after being under his care for 16 years, my sister and I are still the only 2 "white" patients he cares for with Sickle Beta Thal...He even mentions us in his conventions, because I guess we are kind of rare, two of a very small number worldwide.

I have lived a pretty normal life considering the obstacles I have had to endure, (the most major ones have been, Avascular Necrosis which led me to have a total left hip replacement last year, and cataracts on both of my eyes a couple of years ago) but let me tell you that although it's not easy, it's possible. I had my spleen removed when I was 9, but over all, I am HERE!!!! Alive and kicking... in pain sometimes, but kicking!!!!

With faith,love and determination, and obviously the care of a good hematologist, your boys should be alright. I carried two normal children (they are now 9 & 14 ) and had natural childbearing I had then knowing they would have the trait,but not the illness and are both doing great. My husband was tested  before we decided to have children. I had a high risk doctor monitoring both pregnancies, but did extremely well on both of them. 

There are siblings in my family and only 2 of us have the disease, myself and my youngest sister who is now 32, then I have two older sisters that carry the trait and have children that have nothing, thanks to the fact their husbands are clear of the illness, and last I have a brother who is clean as a whistle....My younger sister also has two beautiful children and is she is doing alright considering...

I graduated from Sam Houston State, I worked for 15 years +plus and travel once or twice a year every year around the world.....Sometimes limping with pain,  but nothing will stop me from making memories for my husband and children....I have had my share of crises in the hospitals and now that I am older things are better. For one, I know what to expect; two, I have the patience now to explain to the hospital staff that I am not a "junkie" hoping to get high in the hospital, that yes, you NEED Strong pain medication and they should do the blood test right away when you go to the ER for a crisis and check for sickle activity and call your doctor RIGHT AWAY before they laugh at you and doubt you because you are "white" and the  ER doctors think you are crazy or they are in the wrong room, because they are expecting a black person when they walk into the room, (pure ignorance)... 

I have learned to pace myself, know my limits and take care of any infections right away, to avoid major crisis, and I have learned to live with the pains and control them with medications, without abusing them for sure. I want to enjoy my children. That is my #1 GOAL in this life I have called a journey.  They are my gifts and I cherish them each and every day. It's hard, but it can be done!

My hemoglobin runs at a average of 8-9 which is good for me. I have had a few blood transfusions, not too many, though. My lowest had been around 3.5.  That was definitely panic mode for my doctors. My blood type is O+ which is the Universal type...I can give to everyone A or O (if I could!), but only O+ can give to me. Just for your info, my sister had to have "30 bags" o blood transfused in her in "one month" alone when her liver was acting up with the sickle cell. Wild, but she came out of it well. Everybody can be very different... I am older than her, and I have never had 30 in whole life yet..knock on wood! With her, her symptoms seem to be more about the lungs and organs, mine so far more about the bones and joints, I have lived with constant mild body pains since I can remember. My heart  is slightly enlarged, but pumping just great. My liver slightly enlarged, but nothing to be concerned about...check it periodically for your enzymes count, keep them leveled... not too much Tylenol is a good key. My thyroid is high, but under control.

I am not going to lie, some days are really hard, but there are some that are so good you forget you are sick. I don't obviously know you, but the number one advise I can give you is be patient, strong and loving to them and FOR them and for you....If they have crisis, they will need you at the hospital constantly...  don't leave them alone...

The pain is so excruciating at times, that unless they have a great support doctor and staff, they will think your boys are there to get high and that is the most insulting thing you can endure when you are in so much pain. They need you to push them and to watch that they get proper amount of medical care....the best way to administer the pain medicines is to do it in intervals of smaller but frequent dosages, instead of a big shot every 4 hours...or so, you'd want to control the low/high peaks of the pain by doing in smaller dosages where you can stabilize the pain by repeating them in 2 hours or so...The morphine, Demerol whatever that may give them works well right away, but wears off extremely fast leaving you with hours of extreme pain in between dosages and you can't get any more pain medicine for 2-3 LONG hours for fear that they stop your breathing functions... 
also, the patient self pump works well, if they can give you boosters in between. That is the only way I have been able to make it thru at times without cursing out the world...  Regardless if you are black or white, that if you have sickle cell, it's painful, and we need respect and be treated with dignity. We are not there for pleasure. Professionals know as soon as they do your labs...trust me!

My crisis usually last 7-10 days and then it takes me about a week to recuperate and get my strength at home. I have had as many as 3 major ones in one year, I have also gone 5 years or more without one; so, to me in my case, they are very unpredictable. My sister is just as wacky in that sense....  Infections & Stress usually number one triggers for us. I do ive with some kind of pain almost everyday of my life and I can control much of it at home and with my doctor.

Anyways, I hope your sons are well and healthy...I hope they both have great lives ahead of them and I hope my short story in this email has helped you in some way to have a little insight in the life of someone else that knows exactly about what you may go thru. Three, I learned, not to ask HIM why me?, there is always something that could have been worse. I accept it and it is what makes me who I am today, but it does not define me and I try to make sure it does not control me too MUCH...  It doesn't matter if you are black or white, this illness knows no COLORS, only pain! 

I will put you and your family in my prayers and if you can, and you don't mind, please update me on your boys. I truly hope they are doing great!!!!

May God Bless you and your family,

Silvia


Hello my daughter Kennedy was diagnosed with Sickle cell SC disease at birth (born June 2006). When she was first diagnosed her pediatrician told me that she would probably never have any problems with the disease and referred me to a hematologist.

When we first went to the hematologist (St. Vincent Hospital) my husband and I were never given a straight answer on whether our daughter had the disease or had the trait). This is when we took our daughter to Riley Hospital for Children to find out what was really wrong with her. This is one of the best hospitals for children in the country with a comprehensive sickle cell clinic that sees over 400 families a year from all over the state of Indiana and other states.

When we went to Riley Hospital we were given literature a support group, and additional information to help us deal with the ongoing issues and complications that sickle disease comes with. My daughter's hematologist was very honest and open with us and told us what to expect and that after 6 months of age (the honeymoon stage) we could see the disease manifest itself.

Boy was he right! On January 2007 (Kennedy was 7 month's old) she had her first hospitalization. We did not know what was wrong with her but she had a fever of around 102 that would not go away with Tylenol or Motrin. They did extensive testing and her hemoglobin was around 7 then (of course she was too young to know what her "normal" hemoglobin was supposed to be). She was not given a blood transfusion at that point but she was just diagnosed with the flu, the B strain. She had just been given the week before the A strain flu shot.

Then in February she was back at Riley hospital for another fever and possible infection. As the months continued, she as in and out of the hospital for minor virus infections about 5-6 times.

In September of 2007 was Kennedy's first major crisis. I had brought her home from daycare and she was very lethargic and running a fever around 101-102. I immediately took her to the hospital and one of the  doctor's could feel her spleen (her spleen could never be felt prior to this). We knew that something was not right. She needed an immediate blood transfusion because she had her first splenic sequestration. She was hospitalized for a total of 6 days.

Again at the End of Dec. of 2007 she was hospitalized again for splenic sequestration, fever, and breathing difficulties, and oxygen levels were dropping in the 70's.

She tested positive for RSV (the dangerous respiratory virus) and pneumonia. This time her spleen was even larger than her first splenic sequestration. She was given a blood transfusion and was hospitalized for 6 days. (Her hemoglobin during that time had been (the day before was 10.8 all of the way down to 8.1 within 24 hours).

After this, it was decided that her spleen had to be removed so she just had a splenectomy Tuesday, 1/29/08. The surgery went well but then she was given too much anesthesia and it took her a long time to wake up from surgery (therefore she could not get up and walk after surgery for a while). She developed pneumonia again and her hemoglobin dropped. She was given another blood transfusion and was in the hospital for 5 days.

My daughter is only 19 months and has been through a lot but I know that God is able to heal her body and give her strength. She is a fighter and with a lot of family support, studying and knowing about the disease (knowledge is power), having a support group to go to, you can have a more positive outlook. God will not put more on you than you can bare.

If you would like to e-mail me: This e-mail address is being protected from spambots. You need JavaScript enabled to view it


Greetings from California,

My name is Sheila Marchbanks, I'm a 46 years old and I am living a very full though
sometimes challenged life. I was diagnosed with Sickle Cell Disease as a child. The
initial diagnosis was that I carried the trait, later I was incorrectly diagnosed with
Sickle Cell Anemia, and as an young adult correctly diagnosed with Sickle Cell Beta
Thalassemia. 

Throughout my life I have lived with denial (by myself as well as family members),
with pain, with confusion, with erroneous medical information, and with hope.

I am extremely fortunate to have Persistent Fetal Hemoglobin (PFH). While I was
pregnant for the third time, our first two ended in the lost of our children due to
sickle cell infracts of the placenta and other SCD complications, my husband, Tony
and I were sent to the Genetics Institute of California in Pasadena. It was there that
the diagnosis of SB+T with PFH. Praise be to God for there at the age of 30 many
of my questions were answered.

Due to the PFH, I have been blessed to lead a very productive life. With the positive
encouragement and modeling of friends and family, I have a Bachelors degree in
Business as well as a MBA.

I have just recently retired from working in the Aerospace business as a Manager in
the Proposal/Pricing, Contracts, and Negotiations Business segments. I should say
semi-retired for I am blessed to select coming home to be a full-time Mom two
beautiful teens. The first live birth was our son Micah, who will be 16 years old on
Monday February 9th, 2004. Our second live birth is our precious daughter,
Westlynn Jimise, who was born 17 months later. 

God is good!! He gave me and my husband the courage to try again. He gave us the
faith to believe that we could have a family. God is the great provider, and He gave
us the medical care needed to complete two pregnancies successfully.

We, my husband and I, learned at the Genetics Institute that my high levels of fetal
hemoglobin had and has continued to serve as an antidote to frequent and severe
crisis. Yes, I have experienced many crisis throughout my life; however, I believe
that I have been speared perhaps more crisis and associated health decline due to
having this Super Baby Blood as I call it. 

It is my understanding that one of the newer therapies for SCD is the use of
Hydrouria (maybe spelled incorrectly); that this drug's side effect when used to treat
Leukemia is the production of FH. Fetal Hemoglobin serves to fight off or displace
sickling cells, hence minimizing or eliminating painful crisis. So here I am blessed
with my own PFH!! This news, that I have PFH, received at age 30 provided
answers for me. 

Throughout my childhood when I was diagnosed as SCT, there e were implications
that I shouldn't be sick because at that time my family was told that I only had the
trait. Though as a toddler, I had delayed walking due to painful swelling and as a
child pain followed me particularly in the winter and when I was overly exerted in
play or sports. For now I know, this is why I am overall so healthy, yet I have these
episodes of fatigue, pain, limping, etc. Now both my mostly 'healthy self' and my
sometimes 'sick self' were answered. I could stop doubting who I am!! I could begin
to praise Him (God) for who HE IS all the more. For He gave me this condition so
that I may serve Him, bring Glory to His Name, and realize His purpose for my life! 

It's funny because up until our visit to the Genetics Institute when I was 30 whole
years old, my blood disorder was pinned on my deceased father. Though now it
makes no sense, my Dad was identified as the contributor to both my Sickle Cell
gene and my Thalassemia gene. My Mom had no idea that she was a carrier of
Thalassemia Minor. I guess we figured that the Sickle Cell and Thal were part of
one gene. We smile about this now, saying how we thought that I got my 'bad blood'
from my Dad!! 

This goes to show how accurate testing (for I was tested at another facility when I
was 30 years old and told that I had Sickle Cell Anemia) and family counseling are
critical. 

For every decade my diagnosis changed, at 10 I was told I had the trait, at 20 I was
told about the Sickle Thal as though it was 1 gene, and at 30 correctly told that I
have SB+T. Much thanks to Pat Corey at the USC County Medical Facility for the
educational material that I consumed while on bed rest with my pregnancies. I
learned so much and I pray to encourage young women whom want to become
Mommies to educate yourselves.

Seek competent medical care for you and your partner before pregnancy, find a
perinatologist during pregnancy, and listen and obey God's leading in your life.

I have been told many false statements throughout my 46 years, like these quotes
from Doctors: "you couldn't have SCD, you don't 'look' like you do" and "there are
some people in the world who shouldn't have children and you are one" With that
statement I could have been lead to an abortion and not have my beautiful 16 son
today!! 

At this age, I have experienced repeated pneumonia, acute lung syndrome, avascular
necrosis, 2 incomplete pregnancies, preterm labor and miscarriage, painful crisis
requiring hospitalization, and discomfort in walking. But I still pursue God's best for
my life. At this stage I'm focused in on becoming optimally physically fit. This has
been a challenge. I've had to drop PE classes due to getting sick while moderately
exercising.

If anyone has any advise on the pursuit of physical fitness and overall wellness,
please send your remarks to me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

I would like to personally thank the custodian of this site. I am currently in bed
recovering from a cold that I can't shake and one that I don't want to progress to
Pneumonia. 

I found this inspirational site while trying to find information on SCD and Acute
Iritis. Do you know if there is a link between the two?

Reading the stories was for me the first time that I found a community of like me. I
felt like I was 'talking' to others (outside of medical professionals), who understood
my story. I certainly have been inspired today. I have never written my story like
this. Thanks for the outlet.

May God Bless You and Yours,

Sheila Marchbanks.


I'm 23yrs. old with {SC}, I was diagnosed with Sickle Cell disease at 18mos.. old. I have always been very stubborn with taking care of myself as far as drinking plenty of fluids and taking folic acid on an everyday basis.
My mother always pushes me too drink water even now as an adult woman living in my own house. I consider myself as being a very weak individual. My crises have gotten less frequent over the past 2 years. Sadly but not ashamed to say I have become very addicted to my pain medication, it first started when I became pregnant Nov. 2001. I was in a new relationship and was going through a tough ordeal with my mother and sister. I became non sociable and quite a hermit. I began to take my meds. to keep my mind of off my stress and my loneliness, as I entered my 2nd trimester I started to get out more and enjoy my pregnancy but still taking a morning dose of percocet along with my folate and prenatal vitamins. My Ob provided me with as many percocets as I needed  so that made it very easy for me. I was told by a Dr. that it wasn't the best to stop cold turkey or I would probably end up losing my baby so I used that as an excuse. Its kinda funny because when I would take the pills I would say to myself " what are you doing , stop this, be strong but I wasn't strong enough to fight the addiction. Once I delivered Trinity my daughter who was surprisingly healthy 7lbs 5oz. my addiction began to get worst I was up to taking 5-8 percocets a day. Her father who I've been staying with the entire time knew what I was doing , we fought , broke up about this several of times but now he's at the point of giving up on me now. About 3mos.. ago the percocets became so immune to my body I began to abuse Ms Contin 30 mg. and you all know that is a lot to take. I would take one as soon as I would wake up and all day I would watch the clock waiting for the 8-12 hours to past so I could take another, it was like a job that was stealing from me
instead of  paying me. I was throwing my life away because I would be so sluggish and
drained I couldn't take care of my home as far as cleaning, my hygiene I would lay in the bed all day and eat and watch television. My daughter is 17mos... now and I'm at the end of my rope. God and my daughters father is constantly telling me that this drug abuse is killing me. So as of today Jan. 8th 2004, I went to my PCP and told him about my addiction and he has me on a strict narcotic watch , I can only get meds. when I'm having a crises and only a limited amount. I was terrified of the withdrawals. It saddens me to know I have allowed it to get this far, all my life doctors and nurses have warned me about this addiction and I always said to myself "not me" and now it is me. God is good I must add , I went to church this Sunday and accepted him as my savior and asked him for his strength to get me on the right track. Look how fast he works Thursday, the same week I have acknowledged my addition, confronted it and began to make change in my life. I know its going to be hard but I know everyday is a new and healthier day for me. I also thank God for this site he also brought me here to read all these inspirational letters and has gave me the strength to share my story. God bless all of you and be strong.
monica This e-mail address is being protected from spambots. You need JavaScript enabled to view it


I ‘was born in Nigeria but reside in England. I discovered I have sickle cell disease at the age of 13.Before; I was always in and out of the hospital. No one in my family thought of this disease since I m only the person in my whole family. Before coming to England, I‘ve suffered unthinkable and unbearable pains in my life, pains no one can ever understands except the person suffering from it .Glory be to GOD, when I got to England things changed, thanks to the Medication I have access to though its not interesting because they are Medication you would depend on for the rest of your life.

I look back and still think about many of us like this in the Third world countries where most of us die like Ants due to non- availability of medication. This frustrates and takes tears out my eyes especially when I remember the pains one goes through. I sometimes imagine dropping into a pharmacy and grab all the penicillins and folic acids they might have and import them. I wish I won a lottery, I would have known what to do with it.

Talking about having a relationship with this disease is like adding salt to a wound, at my age I ‘m on my third boyfriend when most of my friends are having their sixth to tenth boyfriends. I used to feel ugly, pale and unattractive when it comes to men and to make matter worse they won’t even ask me out. I also discovered that when you tell some men you have this kind of problem, they would run and never look back or to avoid their ignorance, they make flimsy excuses to dump you. If this happens to you or any one closer to you, don’t think the worst but the best because this can happen to anyone!

I also noticed that many of us give up because doctors tell us that we might die at certain age, we start to engage ourselves in unthinkable acts such as flirting, drinking and partying, and over-doing these things to wipe away time that if eventually we die , at least we ‘ve enjoyed ourselves to the limit. I urge us that it is the most undermining mistake we could ever make. I used to blame people like this but not any more because what many people are yet to understand is that been a sickle cell patient affect us psychologically. All we need are words of encouragement.

There is more to our lives than that. Focusing and believing that you can become whoever you want to become, it might not be for long but let us try to leave up to expectations.

When I was about to start my A’ levels, I chose law, politics and sociology (what hard Art courses could you imagine?). My G.P was not happy with the idea and at the same time did not want to discourage me. I did my best though not exceptionally but at least I was happy because I did what I always wanted to do. To add more headache for my G.P, I told him I m doing law for my degree, he was speechless, he tried to explain how strenuous and difficult (which I experienced during my A’ levels) but he was supportive and understanding. I loved to be a lawyer and a very good mother to my kids in the nearest future. Doing this course has been difficult. I also work part time, I don’t use my illness as an excuse or let it reduce my Self – esteem, I want to do what every normal child does.

I have no clue where the strength comes from but I give glory to ALMIGHTY GOD and with my determination , I do not see myself practicing law in future but definitely a degree holder in law, which is enough for me! . Please don’t let anyone bring you down especially when it comes to relationships. I used to keep my illness from any one I m dating but as times goes on I discover its better if you let your partner know before hand. When it comes to marriage please try to be aware of your partners’ genotype, if your partner really loves you there are sacrifices you can both provide for each other for the Glory of love!

In my conclusion, I want to thank God, my family and better – half for their supports and understanding. I also use this opportunity to thank all parents and relatives who stands their ground to be by our sides when we face our crisis, I WANT YOU ALL TO KNOW THAT YOU ARE THE GREATEST! .PLEASE DONT GIVE UP, COS WE WONT GIVE UP!

Fola Ogunnowo  This e-mail address is being protected from spambots. You need JavaScript enabled to view it


The one overall theme I am reading from this site is the importance of good medical care and strong family support. 

I am a 37 year old woman with SC disease. My story is very similar to those posted here. It breaks my heart to see people with Sickle Cell living their life as if they don't have a life. I try to educate the parents I come in contact with but are often looked at as if I don't know what I am talking about.

My parents were determined to not let the SC rule my life. If I was not going to live past 18, as the doctors stated, then I would have a normal as possible and happy childhood. I was not allowed to fail in school. I either had to make up missed work or my parents got me a tutor. I am a teacher and too often see students with SC missing a lot of days. Their parents use the disease as an excuse and the students end up failing or falling far behind.

The one time that I was hospitalized for such an extended period of time that the school wanted to hold me back, my parents made an arrangement for me to get a tutor and if I could pass the end of the year test then I would not be retained. Well, I tested six months above my classmates!!!

I also learned to hide my pain, which was hard when it came to my mother. If my mother thought I might be sick, I immediately had to go to bed and the liquids & Tylenol started flowing. So, I would miss "important teenage social events" because my mother would not let me out until she was sure I was well.

The only thing I hated as a child, besides the crisis and taunting by some cousins, was the constant drinking of liquids. My grandmother would fill a gallon of water in the morning and I had to drink it all by the end of the day. Looking back now, I know that is why I am so "healthy" today. Once my doctor told me that I would have to quit my high school Pom-Pom squad. He threatened to call the school himself. I begged him to give me one more chance, this was after three crisis. I would drink a glass of water before practice, in the middle of practice, and when I got home from practice. I stopped having crisis after grueling weeks of practice.

I went through the "if I'm not going to live long" phase also. Once away from the protective cover of my parents, I lived my life to the utmost! If I wasn't going to live past 30, then why worry about what I was doing or why plan for my future.Then I turned 30 and realized that maybe God had another plan for my life.

The things I have to look out for now is sudden feelings of thirst, sudden temperature changes especially to cold, and extreme stress. These things almost always signal the onset of a crisis. I try to stay away from altitude changes and physical exertion.

When I see SC people who are constantly sick, they seem to be missing good medical care and strong family support. When I once told a mother that her child should be drinking water more often and be on daily doses of penicillin, she basically told me that I didn't know what I was talking about.

I have often thought of writing a book of my experience with SC disease. I have just recently had my first experience with retinal disease. I am grateful for strong, supportive parents and a childhood doctor familiar with SC. My doctor could predict when I would have a crisis. For example, when my uncle who I was very close to (he was only 5 years older than I) died, my doc told my mother to look for me to get sick. Well, I went throught the funeral "supposedly" fine. My first day back in school, I passed out and spent the next week in the hospital. Doc said that my grief was covering the extreme pain I was in.

On the other hand, I have also experienced medical personnel who do not believe that I am in extreme pain. Medical personnel who feel that you are just a pain medicine "junkie". It is hard to explain just how bad the pain is. I have had the feeling of "why me". I have over 40 first-cousins and I am the only one with Sickle Cell SC Disease.  I have a number of cousins with the trait. I am now married to a very supportive and understanding husband with one daughter, who is adopted. I am now living to see her grow up.

I would love to correspond with the 70 year old woman with Sickle Cell SC Disease. I want to know her "secret". I would love to see my grandchildren.

Debbie Thomas Donohoo   email This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Cleveland, TN 


Fortunately or unfortunately – or both, I am one of the over one million Nigerians afflicted with sickle cell disease. I have written a story which details my on-going grappling with the disease, the attempts to get cured or alleviate suffering through various orthodox and unorthodox means including urine and water fasts. It also tells of my growing up in a polygamous family ruled by an authoritarian father; of smoking and alcohol abuse in early life; of being sexually molested at the age of seven of difficulties at home and school and work caused by health impairment; and of my singular experiences which resulted in my repudiation of religious orthodoxy. At another level, it is the story of other sicklers and ‘normals’ in my extended family.

Perhaps the idea to write my autobiography was born as I sat opposite a doctor who brashly informed I was not likely to attain the age of 25 – he did qualify his pronouncement by saying I might live to 25, but certainly not beyond my early 30s.

Unemployment has been the bane of my life since I graduated Bachelor of Science (Univ. of Ibadan) in 1984 and this has nothing to do with my physical or mental capability. I happen to live in a country where if you have no one to pull strings for you, you get only the crumbs. In 1989/90 I was studying for PhD but discontinued after one year due to financial difficulties. I have survived by doing all manner of odd jobs including commercial motorcycle/bus driving – a distasteful, physically and mentally demanding job from which I often have to run. I also hawk from bus to bus, office to office and school  to school the American lottery during its season.

To conclude I would like you to take a look at the PREFACE to my book:

It comes as a bit of an anticlimax to write a preface after working for so long on this novel. It was sheer hell. Hell, from my own body – from the daily aches and pains, the illnesses, the sleeplessness, the unaccountable tensions – and hell from the effort of writing itself. George Orwell was only too right to describe writing a book as a "horrible exhausting struggle … a long bout of some painful illness." I have exerted myself with a rising sense of foreboding, foreboding whether I would live to see the
morrow, literally, foreboding whether I would not suddenly die or worse, a feeling engendered by a sense of the noose tightening around my neck, so to say, from so many medical diagnoses, the complications of one.

I was galvanized into this activity some time after a doomsday medical practitioner prognosticated I probably had no more than a few years to live. More than anything else this is a book about my experience of sickle cell disease, a life threatening inherited condition of the red blood cells. Along the way, however, I discovered that I could not divorce the total experiences of my life from the parochialism of raising the dust about sickle cell anemia, of crying foul, of entering upon a jeremiad of pain, of seeming to say - or think that I have received a raw deal from life. No, no more can I say that my life had been undone by illness than I can that my interaction with others had detracted from, rather than enriched, the story of my life.

I am immensely grateful to the unseen help – the "invisible instructors" who have been invaluable to me in this work and indeed throughout my life, and who assure me that despite every aggravation, real or imagined, I shall live. So be it!

Name: Ayoola OLAJIDE  Pen Name: Ola Oshodi  Postal Address: P.O.Box 5952, Somolu 100007, Lagos State, Nigeria
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it


I retired on 30 September 1998 from a job where I had worked for 18 years, 
after that time I babysat my two grandchildren for two years while their 
mother worked. I sometimes babysat the children three or four times a week. 
Recently, they went on vacation and I now have lots of time on my hands. So I 
decided that I would get as much information as I possibly can about sickle 
cell disease, which I have suffered from all of my life, I will be 69 years 
old on 26 July 2000. I have had severe complications from this disease, lung 
infarcts, jaundice, atrophy of my spleen, two hip replacements, severe pain 
crises, frequent hospitalizations, transfusions. I found a doctor who would 
come to my home in the middle of the night to give me Demerol for the pain. 
After moving far from my home to be with my husband who was in the military, 
at first I had many problems with doctors and hospital personnel who would 
scoff at my pain at 2:00 a.m. in the morning, but after several meetings with 
my husband who talked to the hospital administrator about the treatment by ER 
personnel, my problems decreased. Also, I began working at the hospital as 
the supervisor of inpatient records, and I never had any problems with ER 
personnel after that time.

I was so fortunate to have some of the best care possible and finally, I 
found out how to head off a crisis. I could feel the pain which began in my 
chest and back, and as the pain subsided in those areas, the pain would 
travel into my arms, hips or legs or all over my body. About three years ago, 
I had become so anemic that I had to be transfused about every two months. 
Usually, I was only hospitalized overnight. Then, I had a transfusion on 31 
December 1999, and instead of my Red Blood Cell count going down it went up, from 8.3, to 8.5 and then 9.1. 

I now control my pain with oral Demerol tablets and oxygen, and lots and lots 
of fluids. Usually, I don't have to go to the ER for IV narcotics. Doctors 
are amazed by my longevity. I started going into the computer and going into 
the Sickle Cell Forum for Adults. I realize now that there are people out 
there suffering unbearable pain on a daily basis, and some of them have to 
endure insults by ER personnel. 

I worked from until 1998 when I retired at the age of 67. I worked each time 
at a healthcare facility and although I was hospitalized on numerous 
occasions, I always had a job to return to. Most of the people who e-mail the 
Forum are not able to work, in fact they are in pain almost daily, is this 
the way people with sickle cell disease have to cope. I was fortunate that my 
husband was in the military and we had good healthcare coverage. I remember 
as a child I would cry day and night because of the severe pain because the 
doctors would only give me Elixir of Phenobarbital which did absolutely 
nothing for my pain. 

I really feel so sorry for the people who e-mail the Forum because so many of 
them don't have the good medical care that they need. In this day and age 
everyone should be entitled to good medical care. Also, some of them are 
having trouble getting SSI and Medicaid. I just feel so blessed, and if I can 
do anything to help these people, I will.

Fortunately, of my two sisters, I am the only one with SSD. I wonder if all 
of the people with SSD are being told to force fluids by drinking at least 
two quarts each day, also, do they know that home oxygen will help. Tell them 
to pace themselves during their work day, and if at all possible, have their 
doctors give them something for pain that is strong enough to relieve the 
pain whenever they feel a crisis coming on.

Yes you may post my story so that other sickle cell patients may read it, 
that is why I wrote it to try to let other people with sickle cell know, 
don't ever give up, keep on fighting. My Mom was told that I would not live 
to the age of 10, I was so sick, then they extended it to 20, etc. One doctor 
told me that I should never have children because I would not live long 
enough to raise them, and if I did live, I would be a vegetable. I have a son 
who is 31, and a daughter who is 27, also, I have two beautiful, healthy 
grandchildren and another grandchild on the way.

Sincerely, 

Inez C. Hardin


My name is Michael Cobb and I have sickle cell anemia. In the beginning I Did not let this bother me. As a kid I still did the things other kid did, But not realizing that I could not do them at the same extent as other Children. This lead to many crisis's. Not wanting this to be an excuse for Me not to try, I still tried and like ever so often I went into a crisis. I Even tried the armed services. In my fifth week of boot camp running the Mile and a half I then again went into another crisis. Feeling the pain and Humiliation of once again my body not giving way to let me do what I wanted To do. This was the experience that would change my life forever.

 As a child I was in and out the hospital behind my sickle cell, then I did Not know any better, but the hospital visit after running the mile and a Half was the one that sent me into the depths of despair. Me thinking that I was in the best care that can be had, by being in the u.s. military.

Everything would be alright but to my surprise. After a few test. They (the Military) determined what that I  was unfit to serve. Me wanting to know. I Asked, what could be done to help my situation and the reply that I got Was the big boom!!!! I was told that I would not live to see the age of 35. Now take in mind that I'm only 18 years of age at the time. At this time my  thoughts were if I'm not going to live to be 35 what the use in trying to succeed in any thing it all would be a waste of time. And at that point I stop caring about anything and everything. That was the worst thing that I had ever done. This lead to more problems than you could ever imagine, drinking, druging, etc...all this went on for about 10 plus years.The only reason why it came to a end. was that I started reading up on the studies of sickle cell which gave me incite on the cause and effects of the disease. Now at the age of 37 I see that I could have done allot m ore with my life. Only if then they had the willingness to spread this information like You are doing now. I never realized where I was going until I found out where I came from, it's all from the power of information. This is the short version there is a lot more to this story.

MIKE COBB
ASHEVILLE NORTH CAROLINA


William Bratton Fights Sickle Cell Anemia as He Battles for
Playing Time For the Rockets. 

Oct. 26, 2000

"No one understands what William Bratton is going through. How could they?" - Toledo Head Football Coach Gary Pinkel 

It usually begins as a pain in his lower back. Next it moves to his joints, creeping slowly into his elbows and knees. By then, William Bratton knows it's
coming. And there is nothing he can do to stop it. All there is left to do is get to the hospital as quickly as possible and hope it's not as bad as the last time. 

In the jargon of sufferers of sickle cell diseases, it's called a "crisis." For Bratton and thousands like him, it means only one thing: excruciating pain. 

"It's unbearable," said Bratton, a junior tailback on the University of Toledo football team. "Some people who have it just want to stop living. That's how bad it is. The morphine doesn't help, nothing helps the pain. Morphine eases it for about 15 minutes, then it's back. Constant pain. You don't sleep. There's no way to describe it." 

Bratton suffered one of his worst crises two years ago in his campus dormitory.
By the time he recognized the symptons, he could barely walk. A 220-pound
rock of a fullback, Bratton had to be helped to the hospital by two of his
teammates. He was hospitalized for nearly a week. "When I was a kid, I cried
non-stop from the pain," said Bratton. "I'm 22 now and I try not to cry. That was
the only time I cried since I've been at Toledo." 

After that incident, his crises became less frequent--until this past summer.
Bratton suffered three crises before August two-a-day practices, then another
during two-a-days. Each time he had to be hospitalized. Each time he came
back, 10 pounds lighter and considerably weaker. Bratton, who can bench press
370 pounds when healthy, found he could barely lift 200 pounds upon his return
to the weight room. 

Not surprisingly, Bratton questioned whether a person with sickle thalassemia,
his particular type of sickle cell anemia, ought to be playing Division I football. 

"I wondered if I should keep playing," said Bratton. "I hate to be the weak link in
the chain. I told (teammate) Chester (Taylor), `I don't know if I can go on.' He
told me, `Do what you can. We'll always back you up, whatever you decide.' I
came here with (tailbacks) Chester, Antwon McCray and Mike Sickles. We're
all close. They knew I was feeling bad. They told me everything would be alright,
so I decided to stick it out. I told myself I would keep trying. I've been playing
well so far this year, and haven't had any more crises." 

Team medical personnel determined that Bratton's string of crises was caused by
simply overdoing it. "We found out he was taking classes, working a job and
doing summer conditioning drills," said UT's head trainer David Huffstetler. "It
was just too much for him." 

Bratton rested, got better, then fought his way back into shape in time to play in
Toledo's second game of the season, a 51-0 win over Weber State. He carried
the ball five times for 25 yards and one touchdown. He has played in every game
since then, rushing for 95 yards on 24 attempts as the team's third-string tailback
and short-yardage fullback. His playing time is down from his sophomore
season, when he ran for 486 yards and four touchdowns. But just playing is a
triumph for Bratton. 

Bratton has been living with sickle cell since he was diagnosed at age eight,
about the same time he began playing pee-wee football. But it didn't stop him
from having a normal childhood. Bratton went on to star at Lima (OH) High
School, where he ran for 1,862 yards as a senior and attracted the attention of
numerous college recruiters. He was up-front about his condition, but that did
not discourage the Toledo coaching staff from offering him a scholarship. They
promised to make any accomodations he might need. 

It was at UT that Bratton learned the name of the specific type of sickle cell
disease that afflicted him. Sickle thalassemia is a hereditary anemia that can
cause blood cells to become sickle shaped instead of circular. This odd shape
can make it difficult for blood to flow to many parts of the body and result in
severe pain. In some cases, patients are afflicted with permanent anemia, making
simple physical tasks difficult and athletic exertion impossible. In Bratton's case,
his sickle cell count is usually low enough to allow him to participate in college
football. He must make certain concessions to his disease, however. 

"I get tired quicker than others," said Bratton. "My oxygen cells will only allow
so much in-take. Most players can do 15 straight plays in a drive, no problem. I
can do maybe four or five. I've done about 10 or 11, but then it takes me a long
time to rest and get back in. 

"I don't know how people with asthma feel, but I think this is much worse. There
are some people on our team with asthma, and they don't get tired like I do. I'm
gasping for air. I'm so tired I can't even drink water. It takes me two or three
minutes before I have enough strength to go back out there." 

Though the physical limitations resulting from Bratton's condition means he likely
will never be a star, he has won the admiration and respect of his coaches and
teammates. 

"William has tremendous courage," said Pinkel. "He has a tremendous desire to
be a part of an athletic team. He's a great example for those with sickle-cell
problems, or frankly for anybody facing some kind of health-related adversity.
Hopefully, his example will give desire and courage to others." 

Pinkel said Bratton has already provided inspiration to his teammates. "A player
might have a physical problem, but then he can take a look at William and
suddenly his problem doesn't seem so huge," said Pinkel. 

If Bratton's story helps others, then he feels his efforts have been worth it. He
frequently talks to young people suffering from sickle-cell diseases, hoping his
status as a college football player might inspire them to greater heights. 

But for now, Bratton is simply one of the tailbacks on the Toledo football team,
trying to earn some playing time. "We have two great running backs, and there
are only so many footballs to go around," said Bratton. "I feel if I keep practicing
hard, I'll get back in the mix and get more carries." 

Even if Bratton never carries the ball again for Toledo, no one would disagree
that his career has already been a success. 

"For me, just making it through a practice with sickle cell is an achievement. I've
been asked, why take a chance? Why put yourself in a position where you could
end up in a hospital? Look, I know if it gets too bad, I'll step away. 

"I just figure if you can tough it out, and you have the athletic ability to play
football, then you should do it. I don't know anyone else that plays with sickle
cell. I feel blessed that I can come out and compete and play football." 


Christopher Nance is The Weather Dudeand he has Sickle Cell Disease. He got the nick-name while visiting an inner city school years ago. A group of young people met him at the door, not knowing his name, but recognizing him from television, "Hey, you're that weather dude," exclaimed a student ...and the title
stuck. Christopher not only does the weather on television in Southern California, He also is an author of children's books, owns a publishing company as well as a production company.

Nance, who never seems to tire from his exhausting schedule, has
been diagnosed as having sickle cell anemia. He is an avid music
enthusiast and plays both the piano and drums. Aside from children's
books, he also enjoys writing concepts for screenplays and
television. Christopher was born in Fort Dix, New Jersey and grew up
in Pacific Grove, California, a community located on the Monterey
Peninsula. He is married and resides in Los Angeles. 

In 1996, Christopher started The Christopher Nance Children's
Foundation, a non-profit organization that helps young people who suffer
from life threatening illnesses.

As the weatherman for NBC-4 Los Angeles, CA, Nance also visits with
thousands of students, delivering his self styled "Let's Talk Weather"
and "Let's Read Together" programs. To date Christopher has talked
one on one with more than 600,000 young people about the importance
of staying in school, tackling science and math and steering clear of
gangs and drugs.

Christopher's "Let's Read Together" program is aimed at fighting
illiteracy. Both programs are delivered free of charge to schools,
libraries and books stores around the country.

The Weather Dude hobbies are music and playing golf. Each year
during the month of October, Christopher other hobby is his celebrity
golf tournament. He invites 300 golfers and the proceeds go to his
children's foundation. A portion of the sales from his children's books
also goes to help support his foundation.

http://www.weatherdude.com/


Prodigy of Mobb Deep has sickle cell disease See:

http://www.sonymusic.com/labels/loud/home/hnic_bio.html 


Hi I am Jackie and I have Sickle Cell. I on the other hand do not have it as serious as some others do. When I was a child I would miss school because I could not walk or feed myself. But now that I am older (Senior in college) I 
do not let it get the best of me. It does not hurt as bad any more either.  Last year was the first time in a long time that I actual was not able to  walk without having pain all in my legs, but now it is when the weather  changes to really cold weather. Like now in New York. Lately my legs have  been throbbing on and off. I usually just take an Aleve and it soothes the  pain to a certain extent. I'm just writing in to tell some of those who have  the "cell" to not let it over come you. I know that the pain hurts and you  just want to cry but you can't let it get you down. I just wanted to maybe  encourage someone.


Tionne Watkins is one remarkable woman. Many people know her as T-Boz from the group TLC. Some people don't know that she is fighting a disease that affects many African Americans, Sickle Cell Disease. (Sickle Cell is an inherited blood disorder that usually occurs mostly among African Americans. Sickle Cell occurs when your circular shaped blood cells turns into sickle bloods cells, which causes the blood to flow incorrectly. This has a serious effect on the body and creates a great deal of pain throughout the whole body.) Tionne is the National Spokesperson for the Sickle Cell Disease Association.


Tionne was born in Des Moines, Iowa. When Tionne was 7 years old she was diagnosis with the Sickle Cell disease. But that didn't stop her from her dream of becoming a singer. In 1991 she hooked up with Left Eye and Chilli, with the help of their old manager Pebbles. They formed the group TLC. After the formation of the group there was great success. 

 

With the groups success they went on tour with "Boyz II Men" in the summer of '92'. No one really knew that T-Boz was suffering constantly with this illness. Chilli and Left Eye knew what was wrong but all they could see was their friend in severe pain before and after their shows.


Being on the road continuously and doing shows almost every night Tionne finally collapsed and was hospitalized for 2 weeks. This is how that vicious rumour got started about T-Boz having AIDS. Some of the nursing staff were spreading these lies. Since then thing have been looking up. She is still with her long time boyfriend Mr. Dalvin from the group Jodeci. She has also discovered with her illness that a healthy diet helps control her disease as well as taking care of herself.

 

T-Boz also has her own company called SHEE Entertainment which she has two rock bands on her label: Mobius Trip & She's the Man. She doesn't limit herself in her taste in music. Not only is T-Boz a talented singer but she also a choreographer. She actually choreographed one of Usher's video. Now the TLC has come out with a 3rd album "Fanmail" which has gone double platinum.


The group will soon release their next single "Unpretty" from the new album, which Tionne wrote. Tionne Watkins is a courageous and talented woman. She has coped with this illness for many years and still is going strong. She sets a good example for people who suffer from Sickle Cell Disease because she is helping people to become aware of such a awful disease that effects a great deal of our African American people.


 

I just wanted to share with you a little story about how my parents raised 4 children (3girls 1 boy) all with SC Disease. Both of my parents are carriers. I am the oldest of 4 and from what I remember my parents were on
a military base when the second child was born and we both were very sick from traveling via airplane overseas. Military doctors couldn't find anything familiar, so when we got back to the states we were diagnosed with
SC Disease. I am 30 years old and I was 2 when this took place. As we got older (all 4 of us) we were all patients at Columbus Children's Hospital under the care of Dr. Frederick Ruymann and Dr. Neil Grossman. My parents
had the hardest times with jobs and taking care of 4 children with this disease. I would like to give a lot of credit to my mother for understanding how rare it was to have 4 children with same disease. Back then we were the
only family at CCH with the same disease and of course we were well known throughout the Hematology/Oncology Clinic and the inpatient units. We've gone through having pneumonia and several blood transfusions during our stay
in the hospital. I would like to aplaude both my parents for making sure we all got through school without being held back or having bad grades. With the help of our Doctors, a Social Worker, and a Registered Nurse they were able to schedule meetings with our counselors at school to explain to them that we were very sick children who at times would miss a lot of school. I can remember wanting to have water fights in the summer and taking hot baths in the winter. Boy did our water bill stay high! Now my sisters and I have children and they all have SC Trait. I thank GOD for that everyday. I could go on and on. Thanks for allowing me to share my family history.

Happy Holidays!!!
Santina R. Green
Clinic Coding Tech
Children's Hospital 
Health Information Management


Hello...

I am a 37 year old black male with "SS" type Sickle Cell Anemia. I am writing this to say that I have been using the Emory University Medical Center Web site for research because I am writing a book about my life and Sickle Cell Anemia. I have been greatly inspired by the inspirational messages that are on this web site. I currently reside in Memphis Tennessee and feel that I have come full circle in my life and I wanted to share my experiences with others.

I would welcome any feedback from those patients who regularly visit this web site to send me any information that they feel could be useful in my book. It is so comforting to know that there are others like myself who are
coping on a daily basis with this condition and to hear the triumphs of the spirit. My email address is This e-mail address is being protected from spambots. You need JavaScript enabled to view it . Please contact me at any time with questions or comments, ideas, success stories; anything positive that you would like to share. We need a lot of positives in our lives these days.

Thank you and God Bless you all!

Phillip F. Mobley


Heidy Dodard

My Quest for Normalcy

As a child I longed to be normal. Now at seventeen I understand it is something that I might never obtain. Since birth I was diagnosed with Sickle Cell Disease. Life for me in general has been hard. My quest for normalcy didn’t make life any easier. I was always ashamed of who I was and it wasn’t till a very intense moment in my life did come to accept it. About 6 years ago while I was undergoing care for a crisis, I sat up and decided not to feel sorry for myself. As I was sitting there in the hospital this is what I began to think about:

My life is complex compared to that of a teen my age. It is not what society would refer to as "normal." I often find myself wondering what is normal and who has the power to decide who is and who isn’t? I now for a fact that I am not normal compared to teens my age. I was diagnosed with sickle cell disease and I have been hospitalized over 100 times. Sickle cell is a deformation in the red blood cells; instead of the cell being round shape it take the form of a sickle or a crescent moon. When the sickle shaped cell gets lodge in a vein it prevents oxygen to get to the certain part of the body. This then cause the person to have excruciating pain. This type of pain can only be treated and not cured, doctors treated the patient by administering strong drugs such as Morphine and Demerol and by give them fluid intravenously. As a child the trip to the emergency room was something I despised but every month it was expected. Sometimes the pain was less painful and at times it felt as if I were about to die. I remember time after time praying to God and asking him why "why me". I have two brothers and one sister none of which was cursed with this disease.

As a child I was unaware of many of my limitations and those in which I was aware of I disregarded. I just wanted to be normal. I knew that pool water made me sick but time after time I would go in. It got to a point that I believed that if I didn’t think of myself as being sick that I would be sick so I ignored many warnings and hid my sickness from friends and family. I spent years not even talking about it but I came to realize that it wasn’t working. Doctors told me that the only way that I would be able to deal with it is if I learned about it. I later became educated to the fact that this disease might have had a cure if it weren’t for the fact that it was a black disease. Also this disease might have been prevented from affecting so many if people were educated about it.

I remember that there was a point in which I would be hospitalize and there would be few doctors who knew about sickle sell. Since than, I have devoted myself entirely into helping people with the disease and those who are researching for a cure. I hope that I will live long enough to accomplish this. I am at a constant battle to accomplish this goal it is as if my body is giving up on me. High school has been hard and this disease has affected me socially and educationally. As a child I was afraid to tell the truth about who I really am but now I let people know because I realize that this part of me.

Most would think of this disease as a curse but in a way it is a blessing it has made me stronger and has made me come to terms with myself. I would consider myself one of the lucky ones because there are some people out there with this disease that lack the help they need. I have loving and understanding family, which even though they can not feel my pain they are with me through every step of the way. As for friends they come and go but there are some friends that I have had since I was a child, they are the ones who cry every time they see me in pain. I am thankful for them cause even though they know my physical status they look at me and speak to me as more than a friend they treat me as if I am there family.

My quest for normalcy has faded into a devotion to aid as much as I can those with my disease. I am now at the beginning of a new quest to helping and maybe soon finding a cure for my disease. I began with my first step in the 7th grade by entering the STEP Program at Stony Brook University. I hope that many other steps to help me accomplish my goal accompany this first step.


Dispelling the Myth: The Important Truth about Sickle Cell Disease

and the West Indian Culture

Melissa Creary

I was three years old when I was diagnosed. My parents did not know what was wrong, when after a day at the pool, I became very ill and nothing seemed to pacify me. I went through test after test. At one point, the doctors even thought I had leukemia. It was not until my aunt, a nurse, asked my mother if I had ever been tested for sickle cell anemia, that my family finally had an answer. Both of my parents had emigrated from Jamaica and unfortunately neither of them had even heard of such a disease. Neither of them knew that they each carried a gene for altered hemoglobin, which in turn had drastically affected their first offspring.

The hemoglobin portion of my red blood cells (the part that carries oxygen to all of my body parts) was altered so that sometimes it caused my normal blood cells to sickle. The most common form of sickle cell disease (SCD) is sickle cell anemia, but there are other forms of altered hemoglobin that may combine to form different types of SCD, such as sickle cell SC and sickle cell beta-thalassaemia. These can be sometimes milder forms of the disease. My parents were told that I had the SC variant.

When there is not enough oxygen present in my blood, my cells become sticky and hard and can not squeeze through small blood vessels. The cells can block the vessels, not allowing oxygen to get to where its needed. This can lead to severe pain and organ damage. When I was in the 5th grade I had to run a mile and instead of telling my instructor that I was tired, I pushed myself and as a result missed the rest of the school year. My Junior year in college, I was so stressed out about a test that I ended up in the ER due to a sickle cell crisis. Painful episodes can be alleviated by avoiding:

  • Over exertion 
  • Infection
  • Getting cold/wet 
  • Stress/emotional upset
  • Sudden temperature changes
  • Dehydration
  • Poor eating habits

Other problems that may occur include stroke, growth problems, chest pain, and ulcers. The disease does not affect everybody in the same way or with the same severity. It affects people in a wide age range and is usually unpredictable in the times a crisis may arise. An episode may last a few hours to several weeks, with excruciating pain or mild discomfort. I have been hospitalized twice, while others have experienced pain and hospitalizations all of their lives.

An important part of knowing about SCD is knowing about the sickle cell trait. The trait is when an individual carries a small amount of sickle hemoglobin, but not enough to cause complications. If a person with the trait has a child with someone else who also has the trait, it is possible to have a child with SCD.

In Jamaica about 10% of the population have the sickle cell trait, but in other islands the frequency varies from 7% in Barbados to as high as 13-14% in Dominica and St. Lucia. This compares to about 8% in the Black American population, and frequencies of 20-30% in Black populations of West Africa and of some populations in Saudi Arabia, India, Greece, and Italy.

You can find out if you carry the sickle cell gene by getting a simple and painless blood test called hemoglobin electrophoresis. Pregnant women or people thinking of having a child should be tested to find out for sure if having a child with SCD is a possibility. Tests can be arranged by your general practitioner or at your local sickle cell center or foundation. Newborn screening is mandatory in most states for SCD so that key early diagnosis can be detected. The only way SCD can be prevented is to detect the sickle cell trait and to make knowledgeable decisions about family planning. Sickle cell disease can be treated however. Pain is treated as it arises and anti-sickling drugs are now available. Transfusions can also be utilized if the SCD crisis is severe enough. Regular immunizations and good nutrition will make those who have the disease less susceptible to infections. Healthy eating includes more grain products, fruits and vegetables, and less food with sugars and fats. Lots of water and juices and less caffeine are also important parts of the diet. Yams, herbal products, and foods that contain zinc and omega fatty acids may also help. Folic acid may assist in blood formation, perhaps improve growth and is found in dry beans, many vegetables such as spinach, cabbage, and okra, and fruits which include kiwi, plantains, orange and pineapple juice.

When I was three, there was not a lot of advancement made in the sickle cell world. Twenty years later, the outlook for someone who has the disease has improved tremendously. In the past, the survival beyond the age of 30 was not likely, but it is now realized that many with the disease live well beyond that age. Easy access to medical care is still not the best it could be in our community, but improvements are occurring, and the development of the disease is being researched continuously. I am currently one of the many worldwide who are involved in researching the disease to improve the quality of life for those whom it affects. It is still important however, to make the public aware of a disease that affects, quite disproportionately, Blacks all over the world. There is still not enough public knowledge and awareness of SCD or public funding for advancements. It is still important to dispel the myth of not only my disease, but of the 50,000 Blacks in the U.S. alone it affects annually. It is not contagious, but a genetic disorder you receive from birth. It is not cancer. The mind is not affected. I completed a college degree, am working, and will be going to graduate school next year. It is not just a "Black" disease as it affects Hispanics and people of some Asian and Mediterranean origin as well. It is not "bad blood" or a family curse. It is a disease that exists just as any other except in a way unlike any other. In its uniqueness, it offers challenges to both those who treat it and those who live with it. It is a disease that has molded my life and made me who I am and hope to be.

About the Author: Recent graduate of Emory University (B.S. in Biology), currently working in the Biochemistry Division of MSM. Has been a part of sickle cell education, advocacy, and research for over eight years, and has the disease. Future plans include attending Emory University for graduate school to obtain a Masters in Public Health to continue the strides made in sickle cell development.

If you would like to help the cause or want more information you can contact Melissa at the Morehouse School of Medicine, 720 Westview Drive, S.W., Atlanta, GA 30310.

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My name is Julia Aruya, I am now 37 years old. I was born in Lagos, Nigeria. Out of 4 children, I was the only one with Sickle Cell Disease. It's strange...people ask me all the time how I feel to be the only child with this terrible disease in my family and If I ever feel sorry for myself for being the one who "got it". I always say NO. How can you
wish this type of terrible painful life on someone else?

At a very young age, my parents were encouraged by others to let me die because I was not a perfect child, a bad apple you might say...but, my father left his job and stayed home to take care of me for about 2 years, then my mother did the same for another 2 years. Each summer, I was sent me to the United States for treatment and rest while my senior brother took great care of me. I was one of the lucky ones.

One of the things that my parents could not emphasize enough was a good college education. Education brings knowledge, and knowledge in turn is power. I had to empower myself for a difficult life's journey and with a

great career, I was ready to take on the world. Unfortunately, the world it seemed was not ready for an imperfect employee like me.


After graduating from college, I was fortunate enough to work for a major fashion retailer at their Dallas corporate office. Due to my illness and the pain crisis, I was absent from work from 30-90 days in a year. This was extensive. Promotion was out of the question. I worked hard, was able to anticipate the need for my job and worked ahead of schedule so as to avoid any extra workload for co-workers in case of my absence but, corporate policy is not something you can work around. If you are not at work 24-7, with minimal absence, you are not promotable.

After several years, I stopped hoping for a promotion with this company and opted to change my career. I decided to put my knowledge from this company to good use, I started a small home based business to be able to supplement my income until I was able to secure a better position.

While successfully running my home based business, which generated more success than I had anticipated, an ex co worker spoke to a fashion manufacturer about me. He was extremely impressed with my qualifications and offered me a position in his company. Though this was a multi-million dollar company, with divisions all over the world, they lacked tolerance for someone with a Sickle Cell disability. After a year of mental anguish, I decided to find another
position. I could not find myself working with such intolerance and ignorance again. Luckily for me, I secured another position in a higher learning institution.. 

I have several episodes of pain crisis. But, I don't let that stop me from anything. In a way, it's mind over matter. You condition your mind and let God rule through your body. It's that simple. Sometimes, my pain gets the better of me, but my strong spirit enables me to come through each crisis a stronger and better person. If you look hard enough, you learn to know your strength, your weaknesses and what makes your body give into the pain.

I have one child, Catherina. She also has sickle cell. With her, I find myself fighting another battle. This time, it's with the school system. Her teacher actually said to me the other day "Catherina is such a smart child. If only she could stop lying about her stomach and back hurting all the time and concentrate on learning. She will be better off if she could...we all know sickle cell is not life threatening. She is always in pain, always sick, always going to the nurse and this is disruptive to the class..." I went home and cried. I realized what lies ahead for my daughter...like me, she will have to fight so many battles. 

I want to encourage everyone with Sickle Cell to take a good look in the mirror. We are ALL God's children. Let NO ONE make you feel like you are less of anything. Go to school, get an education, learn all you can, practice on your knowledge, put it to good use and most important...make sure you get a good enough education so you can have a career, not a job.


With my disease I am still working on getting my Masters. I run a successful business and also have a full time job. Here I am. Still, when in crisis, I cannot stop crying, not from the pain, but for myself. Life is so precious and every minute counts so much if only I did not have to waste it in the hospital.


My daughter's favorite thing is Ice Skating. She also loves horseback riding and swimming. The sky is the limit, no limitations at all. I encourage her to do and be all she can be. She wants to be a medical doctor who finds a cure for sickle-cell. I pray she does.. She is such a wonder. She was the Sickle Cell poster child in Dallas for
the year 2000. I am attaching her picture.

We as people must let the world know about this disease. I've been asked..."what does your pain feel like"? I find myself at a loss for words...how do you put words on something so painful? We must educate the corporate world on this disease. We must take it to the highest level. In my lifetime, one of us will speak to congress about what we
live with each day. I've seen people speak about almost every disease, except of course, Sickle Cell. They are not big enough to endure what we endure. If you are not careful.., you can easily live on the verge of poverty and why? because you have a disease?

Thanks so much for your time.

Best regards,

Julia O. Aruya
Career Advisor
DeVry Institute of Technology


To Whomever will listen,
I am a 70 year old woman with SC Disease. I had crises regularly as a child. After age 37 and at the onset of a doctor prescribing 10 grains of sodium bicarb daily my crises became few and far between.  That doctor is no longer living and I wish to discuss this with someone who will listen. I have had 2 incidents when I was told to stop taking them and each time, within 3 months I was back to regular crises of joint pains. Of course, the disease has taken its toll. I have had bilateral hip replacements, a disk removed. 5 retinal surgeries, laser and crion. I have had 1 heart attack at age 39. I have kidney hemhorages, pneumonia several times. Through all of this I have been able to live a fairly normal life. I have been a teacher, a mortgage banker and at my age I am a contract consultant for mortgage bankers. 


The most meaningful mountain I climbed is that I served as International President 1996 - 1998 for Zonta Int! ernational. Durring that period I vistited more than 12 countries including South Africa, Taiwan, Japan, Europe, for a few. My travels were via air and I NEVER had a crises during that period. I am willing to share this with anyone who has an interest and would be willing to be tested, etc. to see if the sodium bicarb is what is making the difference. Please respond at your earliest convenience.
A grateful child of God.

Josephine G. Cooke


Emory University Winship Cancer Institute,

Dear Sirs,

Please allow me to introduce myself to you. My name is Catherine Akinyi Obuong. I love Jesus Christ as my Lord and Savior. I'm a young Kenyan girl aged 21 years old. I have been suffering from Sickle Cell Disease since I was born. At the moment I'm studying Law 2nd year at the University of Nairobi. Actually my initial dream career was to become a doctor to enable me learn more about this disease that has really given me and my family a nightmare in my whole life and even to help my countrymen and women who are having the same problem as mine. Unfortunately, my parents could not afford the medicine School fees coupled with the huge hospital bills they are paying for me and I opted to take Law instead. 

It has not been so easy for my parents as far as my life is concerned. I am always in and out of hospital most of the time. Actually I thank God for bringing me this far. Even for me to join the Law School, my parents had to organize for a fund raising to enable me get some little money to start off, though not enough but I believe God will take care of the rest. I have read about your Sickle Cell Association of America Inc.through the Internet, and my request is; Is it possible for you to sponsor me to come and attend one of your future Symposiums? This will help me to learn the many complications that are caused by this disease and how to go about them. It will also give me a chance get new ideas of how to handle the situation in case of emergency. In Kenya, we do not have any Sickle Cell Association and by attending these symposiums, we can learn more from you to enable us start our own Association to cater for many Kenyans that are suffering from this disease. This can also give me a chance for screening, counseling and supportive services internationally.
Hoping to hear from you soon.
Sincerely,
Catherine. This e-mail address is being protected from spambots. You need JavaScript enabled to view it


AUTOBIOGRAPHY OF INGRID WHITTAKER-WARE, ESQ.

I was born in 1962 to Raphael and Muriel Whittaker. The fourth of five children born to my parents, I was raised in the sunny island of Jamaica, and migrated to Atlanta, Georgia in 1980. I was the first girl born to my parents after three boys, so my mother gave me all the names she had been saving up for a daughter. I was diagnosed with sickle cell disease (SS) at eleven months old. Although I exhibited signs of jaundice from birth, the doctors did not properly diagnose my disease until my parents took me to the doctor because I was having an uncontrolled fever and crying more than usual for an eleven month old. I am the only one of my siblings to be born with the disease. Both my parents have the sickle trait, as do one brother and my little sister.

My parents were firm believers in a good education because they knew that knowledge opens the door to so many things. They ensured that each of their children received a good basic and rounded education, regardless of what other challenges each faced. It was as a child that I learned the value and empowerment of knowledge and determination. Those basic values were instilled at such at early age that I can remember one particular occasion where I went cried and begged my parents to send me to school, undaunted by the fact that I was not feeling in the best of health. That very same day, during the lunch hour, I was hit in the head by a stray stone thrown from the playground. The teachers wanted to call my parents right away, but I begged them not to, because I feared my parents would take me home and keep me out of school for several days until I was completely well. At that time being in school helped to lift my spirits and take my mind off being more physically challenged than my peers. I was determined not to miss school, so I agreed to sit quietly in class if the teachers and my parents would only allow me to continue to attend school.

I was blessed to have had the expert and compassionate care of Drs. Elaine Reid and Graham Serjeant. To them both I owe a depth of gratitude for the care they provided me while I was growing up. But then, I have been blessed from the time I was born. When I was diagnosed with sickle cell disease the doctors did not expect me to live past my sixth birthday. In fact, I was initially diagnosed as having leukemia, and it was not until further testing was done that they came up with the diagnosis of sickle cell disease. Despite the gloomy predictions from the doctors, the good Lord is the author of my life and had other plans for me. So, He has always placed me in the care of the very best doctors in the area of sickle cell disease and research. Dr. Reid, watched over me the only two times I was hospitalized as a child. The first of those two times I was not expected to live due to the seriousness of the infection. I was very young then and do not remember much about that hospitalization, but I do remember being placed in an oxygen tent and the grim expressions of the medical staff and my parents. I survived then as I am surviving now. Dr. Serjeant cared for me through adolescence into adulthood, and it was he who first taught me to protect my legs from insect bites and injuries in an effort to minimize leg ulcers.

When I was migrating from Jamaica, Dr. Serjeant sent me with his blessings to Dr. Jim Eckman and his team of dedicated professionals at what is now known as the Georgia Comprehensive Sickle Cell Center at Grady Memorial Hospital in Atlanta, Georgia. When I first attended the clinic, the Center was little more than a 2 room clinic, rotating the floor space with several other clinics. However it was staffed by three of the most dedicated health care professionals in the persons of Dr. Eckman and his assistants, the late Mrs. Phyllis Benjamin, R.N., and Mrs. Joanne Beasley, R.N. Today, the Center is the premier institution for sickle cell care worldwide, operates 24 hours a day year round, and has it own dedicated floor space at Grady to host its clinic and provide short term treatment facilities for its patients. Dr. Eckman made sure I had continuity of care when I temporarily left Atlanta for travel and further study. He made sure I had contact names and numbers or sickle cell care providers for the various destinations to which I traveled.

Dr. Doris Wethers (now retired) and her team of caring and compassionate staff at St. Lukes-Roosevelt hospital cared for me during my three year sojourn in New York city. Finally, Dr. Douglas Collins in Atlanta, Georgia must now endure my many protestations each time he recommends a hospitalization or procedure that I am not comfortable with (never mind the fact that his recommendation may be actually what I need at the time).

I attended the well respected Spelman College, from which I graduated with a double major in three and a half instead of the usual four years. At Spelman I majored in Political Science and Economics with a minor in International Relations and graduated magna cum laude. Life at Spelman was challenging and fun. I was blessed again to have professors who inspired and challenged me to reach for the stars and further instilled in me the truism that knowledge is power. For the most part, I managed to stay out of trouble with sickle cell disease at Spelman. Although there were stressful times, what with the pressure of exams and the like. I viewed that type of stress as positive challenges and managed never to have a serious pain episode for which I had to be hospitalized. I tried my best to take care of myself by hydrating myself constantly and following the healthy practices that I had learned early in life, and which practices were reinforced by the staff at the Sickle Cell Center.

I had several leg ulcers, and one bout with what was suspected to be osteomyelitis while I was at Spelman. I remember my mother waking me up early one morning and asking why I was moaning. I told her that I was not moaning, but at that point I immediately felt the pain in my ankle. This was the first time I was given a mild narcotic medication (Tylenol 3) to help control the pain. I could not do my usual activities that summer, which included working at a summer job. However, I refused to allow the summer to be an entire loss and decided to take a course in calligraphy. I am still able to write calligraphy today and sometimes get requests from family members to do a special piece for them. While at Spelman I also took the opportunity to again take piano lessons, which I took as a child. Playing music, particularly the piano at that time, often helped to relax me and reduce my stress.

While at Spelman I won the prestigious Thomas Watson Fellowship. I was the only student from the Atlanta University Center, and the first in many years, to win that award in 1984. This fellowship afforded me the opportunity to travel to Venezuela in Latin America and extensively in Europe, in the quest of being a "better world citizen." On returning from my travels in 1985 I enrolled in Columbia University School of Law in New York City. I graduated from Columbia and returned to Atlanta to work as an attorney for the federal government, where I have remained for the last thirteen years. This has afforded me the opportunity to travel, purchase a house and enjoy a few of the finer things life has to offer.

Whether I travel on business or for pleasure, I always take care to properly hydrate myself before, during and after flying and have never encountered any major sickle cell related problems due to flying. The air does sometimes become a little dry, but I counter that by breathing into a cup with a few drops of water or a few slices of lemon. A flight attendant taught me that trick while I was on one of the long flights from the U.S. to Venezuela, and the dry air had become uncomfortable to breathe.

During this life’s journey, I have had many challenges, particularly in the last seven or eight years, as I have grown older. However, I have also had God’s covering and His many blessings. Some of my challenges from sickle cell disease have included recurrent and painful leg ulcers and one aplastic crisis. The aplastic crisis racked my body with so much pain that I can only describe the pain as feeling like I had been hit by a runaway freight train. This aplastic episode was also accompanied by high fevers in excess of 105 degrees. I remember awaking from a feverish sleep to see my husband shivering with cold as he sat in the room with me where they had severely lowered the room temperature in order to try to bring my body temperature down. I also have frequent pain episodes (which thankfully I usually do not have to be hospitalized for), mild retinopathy, and frequent blood transfusions (a fairly recent development). In addition I had gall bladder disease and a heart attack before age 40. I have also had other illnesses which were not initially sickle cell related, but became secondary to sickle cell when sickle related complications developed.

Some of my biggest blessings include the fact that despite the bleak outlook and acutely shortened life expectancy predicted by doctors when I was first diagnosed with the disease, I am here to tell my story almost four decades later. I have also been blessed with a very supportive family, including a mother and father who had faith that their first daughter would survive and did everything in their power to ensure that I did. Their efforts included making sure they learned as much as they could about the disease and then passing that knowledge on to me so that I could in turn take care of myself. My parents maintained appropriate communications with my doctors while I was a child so that I could get proper and immediate treatment when necessary; ensured I had a proper diet and nutrition; and provided a comfortable, positive and stable environment in which I could grow up. My three brothers, sister and extended family and friends have also always been very supportive of me.

Today, I am married to Willie J. Ware, Jr., my caring and supportive husband, who stands guard at my bedside each time I am ill. He hovers over me like a mother hen and gets on my case about taking care of myself as much as or worse than my mother does. I am also the proud mother of the cutest and most charming three year old toddler, William, who came into our family by adoption. I am fulfilled by having the joy and comfort of knowing that I am loved and cared about by not only my husband and son, but by my extended family and friends as well.

To my fellow comrades in arm living with the disease I challenge you to the following: (1) Develop your spiritual life and ask for God’s continued blessings, because even when the doctors and everyone else give up hope, He is the only one that can bring you through the many trials that you face; (2) adopt a positive attitude and know that with God’s help you can do anything you put your mind to -- believe in yourself; (3) believe that knowledge is indeed power and educate yourself as much as you can about your disease and your body and take all the steps necessary to stay healthy and positive, including maintaining proper contacts with your health care providers and a healthy diet; and (4) continue to have faith and hope that a cure to this disease will be found soon, and do whatever you can to contribute to that cause. To care givers, family and friends I say thank you and continue to keep the faith. Keep yourself and your loved ones encouraged. The more you learn about the disease the more you can help your loved ones and educate others in the fight against sickle cell disease. To health care professionals, again I say thank you. I also challenge you to continue to provide care in a compassionate fashion, treating your patients with the respect and dignity you would accord anyone who comes across your path. You never know -- you could be entertaining a future lawyer, doctor or influential person. Encourage your patients to live as full and productive a life as possible.

To my mother who still encourages me and gets on my case about taking care of myself and to my father (now deceased) I give my love and thanks for providing me with the best care possible and instilling a positive attitude in me at an early age. Your early efforts have allowed me to be me and to live a fulfilling life. I thank my brothers Richard, Paul, and Michael, and my sister Allison for your love, prayers and continued support over the years.

To my husband Willie and my son William, I give my undying love and thanks for completing my life and loving me the way you do. I pledge my love to you both and my intention to do everything I can, with God’s help, to stay around for another forty decades to share my life with you. I also thank my many friends and well wishers who have all encouraged me along the way. Finally, I thank my heavenly Father for your many blessings and for allowing me the opportunity to be a blessing to others.


Hello there! My name is Maria Teresa Olivares, and I am 40 years old. Now...I has been suffering from Sickle Cell Disease my whole life, I am from Managua, Nicaragua, being a poor country I was diagnosed as a leukemia patient, suffering from hepatitis, kidney infections, liver problems since early age (5), until the age of 22 I was treated like a leukemia patient, I got married, lost my first child, (miscarriage), during my second pregnancy, I had a serious sickle cell crises, the child, my only daughter now 16, was born just fine, it wasn't until coming to this country, and after a car accident, that the doctors finally said: You have Sickle Cell Disease....I am not black, I have not black roots in my family either...and my father and mother do not have even a trait of this disease...how I got it? only God knows.... In 1994 I had the worse case of sickle cell in town!!! I had a heart attack, I had a stroke, blood transfusions every 2 weeks, a Gall Bladder surgery to remove stones and spleen...then in 1995 I had a surgery to stop my menstrual period...I had a right shoulder replacement, and a right knee replacement too. I forgot to mentioned that in October 1994 I had a morphine pump implant, to help me deal with the horrible pain...then my doctor started me with Hydrea...it was working until a second heart attack cames...I was depressed between nov./96 and may/98, a year and a half full of darkness, and with a big desire to take my own life, as the only way out of this suffering...with the help of friends from church (I am a Roman Catholic), family prayers and a little bit of self-desire, I go out of the depression,.. Thank God.

Right now I am in full service at church, as a cursillista de colores, trying to live my life as God wants me to...I am working again since June/98, I am dealing with the pain taking Ansaid 100 mg., Folic Acid..the Morphine Pump Implant...Hydrea,..my last transfusion was 03/15/02, my blood level still low...my last serious crises was only a week ago, I spend a few days at hospital's rooms between Saturday march 24 and Thursday march 29...I am fine now, I hope..I am praying for all of those people who has to bear this awful pain in a daily basis, and asking God to keep an eye on us always...God bless you all!!! and keep fighting...a special thanks to my husband Alfonso, my beautiful daughter Christian, and my dear friends in the Carmelite Monastery in Salt Lake City, Utah, whom has been praying a lot for me, ...God bless them all!!

Thanks for your attention...Maria Teresa Olivares This e-mail address is being protected from spambots. You need JavaScript enabled to view it West Palm Beach, Florida


Activist Berrutha Harper lobbies for Sickle Cell - The power of one mother to establish the Sickle Cell Center http://www.accessatlanta.com/ajc/projects/keonepenn/side1031.html

A place of Their Own - The Georgia Comprehensive Sickle Cell center http://www.accessatlanta.com/ajc/projects/keonepenn/main1031.html


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Last Updated on Tuesday, 27 April 2010 15:48
 
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