Sickle Cell Disease - Describe Your Experience

The eMedicineHealth doctors ask about Sickle Cell Disease.
Please describe your experience with sickle cell disease (sickle cell anemia).
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See what others are saying

Published: August 30

I feel truly blessed in that I am 61 and a half with sickle cell (SC) disease. I had pain episodes as a little girl, but no one knew what the problem was. In my early teens, I was said to have rheumatoid arthritis. I had a baby at age 19 and a few days before I delivered, they finally diagnosed me with sickle cell disease. I didn't have a clue as to what that meant. Throughout my life I learned my triggers, such as being wet and cold, stress, and not getting the proper rest. Now that I know this, I try to do all I can to avoid the triggers. My worse time was going through a divorce in my early 40's. I really didn't handle the stress very well, and was really in denial that it was stressing me. I was in the hospital every other month for the entire year. I had gone years without crisis, and I continue to do so. I recently retired from an office job after 33 years. I had one other job where I worked 7 years, so I'm truly blessed to be retired at age 60. A few years ago I went to the ER in crisis and a nurse just went on and on that she had a sickle cell patient that was 58. Last month, I went to the ER and the doctor said he had never met a SC patient over 40 years old. I feel the key is to find a good hematologist. I had the best and he really taught me a lot about the disease. Also, educate yourself and others as much as you can. I attend conferences and do a lot of reading about sickle cell. Another key, (as a doctor told me), don't try to be a hero. If the pain is really bad, go to the ER and don't let it get out of control - avoid a hospital stay. Being able to work and have the best insurance and doctors was also a plus. I hope something here will help someone..

Published: September 11

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..