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: 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: 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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