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 through 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