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

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

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: treeciecup, 19-24 Female (Patient) Published: February 22

I am a 24 year old African-American female. I was diagnosed with having Sickle Cell Anemia (SC) by a Nigerian doctor who had seen similar pain episodes in other Sickle Cell patients. My childhood was riddled with hospital visits, almost every week. Although my crisis are rare now, I am still in constant pain, but I ignore it because it is manageable. When I was reading other people's experiences, they so closely resembled mine. I was thought to be a drug addict, dealt with always having to catch up in school (I almost did not graduate from high school), and having to explain to too many teachers about the disease without them ever really understanding it. I thank God because I have been through a lot in my 24 years and I'm still alive, married and happy. I have had acute chest syndrome twice, pneumonia plenty of times, and other complications. About five years, I was put into a coma because my body began shutting down on me (it couldn't handle the numerous crises that I was having all at once). The doctors had told my mom to say her goodbyes and make the necessary preparations; I was 19 years old. But, God pulled me through and I woke two weeks later. After that episode, it was decided that I would began doing blood exchanges every three weeks to help with the pain. Since I've started the pheresis program, everything has been going well and I thank God for this procedure.

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Comment from: Theresa, 25-34 Female (Patient) Published: January 27

I'm a 32 year old female with 2 children. I've been blessed where I haven't been in the hospital for a year. Yes, I still have aches and pains (mostly joint pain) here and there. My last episode was very painful. I don't remember having one that bad since I was in grade school. I really thank God for my doctor. She never had the, "I'm the doctor, you're the patient", attitude with me. We've always worked together on what's best for me. Sickle Cell can be very stressful. Especially dealing with the wrong doctor (someone who knows everything and not willing to listen).

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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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