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

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
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The Power of Information: A Letter from Michael Cobb

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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 crises. 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.
Read More »

Managing the Pain: Inez C. Hardin

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
Read More »

Ola’s Story

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
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Good Medical Care and Strong Family Support Can Go a Long Way: Letter from Debbie Thomas

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
Read More »

The Psychological Impact of Sickle Cell: Fola Ogunnowo

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
Read More »

Monica’s Struggle with Pain Medication

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
I'm 23yrs. old with SC. I was diagnosed with Sickle Cell disease at 18 months. 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.
Read More »

Sheila Holds on to Hope

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
Read More »

Kennedy’s Story

By calovel On March 3, 2016 · Add Comment · In Patient Narratives - Written
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.
Read More »

A Letter from Maria Teresa Olivares

By calovel On January 1, 2016 · Add Comment · In Patient Narratives - Written
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...
Read More »

Autobiography of Ingrid Whittaker-Ware, ESQ

By calovel On January 1, 2016 · Add Comment · In Patient Narratives - Written
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...
Read More »

Letter from a 70 Year Old Woman with Sickle Cell Disease

By calovel On January 1, 2016 · Add Comment · In Patient Narratives - Written
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...
Read More »

A Story from Nigeria

By calovel On January 1, 2016 · Add Comment · In Patient Narratives - Written
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...
Read More »

Dispelling the Myth: The Important Truth about Sickle Cell Disease and the West Indian Culture

By calovel On January 1, 2016 · Add Comment · In Patient Narratives - Written
By 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...
Read More »

Letters from Caucasian Families with Sickle Beta Thalassemia

By calovel On January 1, 2016 · Add Comment · In Patient Narratives - Written
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 Thalassemia Plus. I am of Italian decent and have a thalassemia 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...
Read More »
 
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This site is a collaboration between members of the Emory Center for Digital Scholarship, the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, the Emory School of Medicine, and the Comprehensive Sickle Cell Center at Grady Health System, Atlanta, Georgia. The Editorial Board of the Sickle Cell Information Center manages content of the site, but is not responsible for any inaccuracies in content or links provided. In no way will the participating entities, the Editorial Board, our contributors, or any participants be held responsible for any problems that might occur, or any damage or loss sustained due to the use of information (or inadequate or incomplete information) that may be contained on the site.

 

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