Patient Comments: Sickle Cell Disease (Sickle Cell Anemia) - Experience

Please describe your experience with sickle cell disease (sickle cell anemia).

Comment from: jackie, 7-12 Female (Caregiver) Published: January 08

My son was diagnosed with sickle cell disease at the age of 9 years and before that none of us suspected anything of the sort. We have always maintained a healthy diet and often use Seven Seas cod liver oil. Maybe it has also helped but I am thankful for his good health.

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Comment from: skinnyminny, 35-44 Female (Caregiver) Published: January 13

We have recently buried my father, a sickle cell anemia sufferer for many years. He passed away on Jan. 8, 2010, at the age of 67. He lived a long and productive life, despite the many hospital visits. His faith in God, an extremely healthy diet, and unwavering family support allowed him to live to such a ripe old age, all things considered. To all those who are at the beginning, middle, or end of your journey, look to a higher power, as I have and continue to do so. I have just had a niece (8 years old) diagnosed with sickle cell disease five months ago. And it begins all over again

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Comment from: shantiecutie, 13-18 Female (Patient) Published: November 04

I'm only 14 now, but since I know I have sickle cell, and I know how to control it, it's much easier for me to deal with it. Sometimes I have problems at school because my school is literally 1/4 of a mile long and I have trouble walking from one class to another, but my teachers know what's wrong with me if I don't look like my normal self. And missing school is always hard because I have to catch up, and when I do come back, all the kids ask why I was out, and I can't tell them the truth because I'm scared they might not like me anymore. I know it's stupid, but that's how I feel.

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Comment from: zecdo, 35-44 Male (Patient) Published: October 08

I'm an African with sickle cell disease. I'm 38 years old. I spent most of my childhood in and out of hospitals, though, when I turned 30, I rarely had pain crises. The only seriously issue I had was priapism which ended up ruining my privates. Well, I had an operation and had an alpha mentor tube transplanted. Now I have a son who also has sickle cell, but I did not know my wife was a carrier until when she was pregnant. Well, my son is doing really fine. He is on folic acid and amoxcillin daily.

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Comment from: lisa, 3-6 Female (Caregiver) Published: October 07

I have a 4-year-old daughter who was diagnosed with sickle cell when she was 24 months of age. She is presently on Amoxil and folic acid twice daily. When the crises occurs, it is sometimes very hard to manage the pain. I heard about the pediatric HUGS program that is still on trial but is working in toddlers and infants. If anyone who is trying this drug and has information, please blog. I just want to be fully aware.

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Comment from: sapeachy, 35-44 Female (Patient) Published: May 20

I am a 41-year-old woman with sickle cell disease. When I was a small child, no one could tell my mom why I was having so much pain. I found out eventually when I was in the third grade. I have been in and out of hospitals all my life. I learned to live with my sickness, and I have gotten better over the years. The only thing I hate about this disease is that when you go to hospitals to get help, you have some nurses and doctors thinking you just want the pain medicine. I just want the pain to go away. I have a supporting family that helps me through it all. And I also have my heavenly Father who I know is a healer. I tell everyone I meet that God is a healer, and I'm still here because of Him.

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Comment from: wildcardma55, 45-54 Female (Patient) Published: February 24

When I am going thru a crisis, sometimes the medical community treats me like a drug addict. All I want is the pain to stop. As I have gotten older(54),it seems I am having sideline problems(severe back, hip, arm and leg pain)and my primary physician won't prescribe anything but Tylenol 3's(which don't work). I do go see a medical oncologist, but those visits are far and few. I would like to understand it more and would love to find out how I can manage my pain better. When I was at the doctor's the other day, I was told by one of the physicians, that they were going to start me on the hydroxyurea, but reading up on this medication has scared me to death and from others who have the same condition as I, it sounds as if the side effects are horrible.

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Sickle Cell Disease (Anemia) - Diagnosis Question: How was your sickle cell anemia diagnosed?
Sickle Cell Disease (Sickle Cell Anemia) - Symptoms Question: At what age did symptoms of sickle cell anemia first appear in someone you know? Please describe other symptoms.

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