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

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

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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Comment from: lovinlife, Published: January 27

I am a sickle cell sufferer and I have had it since I was born. I am 18 years old and I have regular blood transfusions, my sickle cell has been quite manageable however it has lead to other problems like my knee giving way quite often. Through my experience and listening and reading to other people's experiences I have realized that there is more to life and with looking after yourself and taking medication at the right time you can lead a healthy life just like other individuals who may not have any illness at all.

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Comment from: Faith in Me, 45-54 Female (Patient) Published: January 25

I am a 53 years old mothers of two. I have had sickle cell since Birth. My mother tells me I am part Europen Caucasian so I don't look like I have sickle cell. But when I am sick I know that I have it. I too did not want any children because I did not want them to suffer like I did. But God have given me two beautiful girls and they do not have it. I come from a family of 10 girls and I am the only one that has it and I and glad because I know that I am the strongest of the 10. I control my SC with OTC drug, Hot baths and lots of fluids. I had the same Doctor for 29 years and He makes sure I check my blood every years,I am thankful to God because after Hurricane Katrina He was the first person I look for when I came back to the city. I did not care about any of the other doctors because I knew he was the most important one because of the stress and all the loss I have to handle. I continue to battle with fatigue and other illness but all in all I am feeling good. Thank God for all of you who continue to live with this and continue to be strong. I work at a place that has not knowledge of my illness and these are black and white people yes I am amaze at this. But again I don;t displays that I need anything from them and I manage to keep my jobs. I feel that if I can take my daughter to school everyday I can go to work. My Motto on all my letters end with (God keep me on my feet)

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Comment from: samuel, 25-34 Male (Patient) Published: December 01

I have experienced this disease first hand because I am a patient; it is hell Ido not wish it for my enemy. I would like to help in anyway to reduce the effect if this disease on the little children.

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Comment from: lily, 35-44 Male (Caregiver) Published: November 02

When my husband told me before our engagement that he had sickle cell anemia I was so sad and broke down in tears. I still agreed to marry him nonetheless and face the consequences. He is 36 years and so very strong. He is very energetic with household chores. He drinks a lot of water as this helps his blood freely and prevents blockage of his vessels. I believe he will live till 100 despite his sickle cell anaemia.

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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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