Sickle Cell Disease (Sickle Cell Anemia) - Experience

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What is sickle cell anemia?

Sickle cell anemia (sickle cell disease) is a disorder of the blood caused by an inherited abnormal hemoglobin (the oxygen-carrying protein within the red blood cells). The abnormal hemoglobin causes distorted (sickled) red blood cells. The sickled red blood cells are fragile and prone to rupture. When the number of red blood cells decreases from rupture (hemolysis), anemia is the result. This condition is referred to as sickle cell anemia. The irregular sickled cells can also block blood vessels causing tissue and organ damage and pain.

Sickle cell anemia is one of the most common inherited blood anemias. The disease primarily affects Africans and African Americans. It is estimated that in the United States, some 90,000 to 100,000 Americans are afflicted with sickle cell anemia. Overall, current estimates are that one in 500 U.S. African American births is affected with sickle cell anemia.

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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: 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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