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

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

Comment from: Poster Child, 45-54 Female (Patient) Published: December 23

I was in the hospital a lot as a child, and I missed a lot of school. I had a sickle cell anemia crisis every 3 months when I was in my 20s. In October 1993, I was diagnosed with iron overload, and hepatitis C as a result of the many transfusions I had. In 1997 I started hydroxyurea and I was crisis free for 5 years. I am now in my 50s and I'm living the best life that has been allowed me.

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Comment from: African, 45-54 Female (Caregiver) Published: March 26

I am a mother of 4 girls. My second girl and the other girl is a second twin meaning I have 2 girls with sickle cell anemia. They were diagnosed during their first year. The first year was terrible most of the time, they were hospitalized for chest crisis, joint crisis and infection. They had to be on several blood transfusions and other routine medication; until they were placed on hydroxyurea. Thank goodness they are super stable! There's been no hospitalization for 2 to 3 years now or even more. Good diet, moderate exercise, love, care and support from their other two sisters has being amazing. I want to conclude that if you or kids need to start hydroxyurea I will say go for it because the doctor monitors your blood level constant to determine the right dose for you and subsequent follow up of your dose of titrate therefore, no need to be afraid for side effects. It has greatly reduced the frequency of crisis.

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Comment from: alladice, 45-54 Male (Patient) Published: April 22

My experience with sickle cell anemia became easier with the more knowledge I have had over the years. My toughest years were my 20s, when I found myself going to the hospital with great frequency because of a series of crises. My late 30s and 40s were better. I only went to the emergency room every 13 months or so, allowing some hospital staff to call me the "rare" sickle cell patient. My early 50s were very tough, particularly 51 through 52, where I was hospitalized frequently because of frequent crises. Now that I am on hydroxyurea, my crises have been rare. I currently have hip pain, which I am sure will lead to a hip replacement this summer. One note though, a healthy diet is extremely important. Have lots of juices, fresh fruits, and vegetables. I am also an advocate of physical exercise, using my health club membership religiously. Meditation is good, as is good warm showers, and saunas.

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Comment from: studygirl27, 25-34 Female (Patient) Published: August 25

I'm a 27 year old African-American female dealing with sickle cell anemia (SS). I had a rough childhood full of hospital stays and having my spleen and gallbladder removed. Even now in my late 20s I'm having to go to the hospital 3 or more times a year. I hate going to the emergency room because even though the nurses and doctors are supposed to help it feels like they are looking at me like I'm not in pain and I'm just a patient seeking pain medication. I just wish they could be in our place and see what we live and go through on a daily basis with this disease.

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Comment from: joyce, 3-6 Male (Caregiver) Published: July 08

My son was first diagnosed with sickle cell anemia at age 4 but when he shows symptoms l give him a herbal blood builder and it relieves him from the pain. However, someone introduced Dioscovite to me. I have just started using it will update you latter.

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Comment from: dorica, 19-24 Female (Patient) Published: February 24

I am now 23 years old and I have a lot of experience with sickle cell anemia because I have had this problem since I was a child and I am happy with it because I live a life like other people.

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Comment from: j, 19-24 Female (Patient) Published: April 14

I have living with sickle cell for 20 years. It's not much of a serious illness, I don"t drink loads of water or take medication. I live in cold country and last time I was ill was 4 years ago. In my childhood times I swam a lot, ran a lot, and nothing happened. The only problem I have is every flu that"s around I get it; which makes me feel so insecure because I work and don"t want to get tired.

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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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