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

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

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: 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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Comment from: Shamyra, 25-34 Female (Patient) Published: November 01

When I was a little girl, all of my friends would laugh and talk about me because I have sickle cell. Now that I am 27 years old, I no longer experience it, and am able to embrace my disease and not be ashamed of it. Sickle Cell affects my life tremendously. It causes very bad pain that causes me to be hospitalized for about a whole week. Even after I am discharged from the hospital, I am still in pain. I have to miss work and worry about getting fired. I have things that I absolutely love to do but can't, or if I do I have to be extremely careful. I love to swim, but sometimes can't because I know that after I am done swimming, my crisis will start. I will have to take Motrin before I even get in the pool to help avoid the crisis. I can't run or else my crisis will start and I will run out of breath fast. I can't travel by airplane; I can but if I do, I need special attention such as oxygen or else my crisis will start. Being cold always triggers my crisis. I want to be a police officer, I am scared that after I am finished with school and then get a job in my field, I won't be able to, because being a police officer requires you to run, be tough, etc.

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Comment from: Bumblebee, 13-18 Female (Patient) Published: November 25

Well, I'm a teenager and I have sickle cell disease. So far, I've had a pretty painful childhood relating to sickle cell crises and hospital visits. When I was 9, I had my spleen removed, and somehow then the crises have become very manageable, with bad episodes only once every year, if at all. All I need to take is Tylenol for the pain in my feet and arms, and that's it. I figure that sickle cell can become very manageable, but it depends on the patient and the severity. Looking at all these comments have helped me not to lose hope, seeing people with sickle cell living longer and longer. I feel very lucky to be as healthy as I am today.

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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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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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