Viewer Comments: Sickle Cell Disease - Describe Your Experience

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The eMedicineHealth doctors ask about Sickle Cell Disease:

Sickle Cell Disease - Describe Your Experience

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

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Comment from: Carolyn, 55-64 Female (Patient) 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.

Comment from: alladice, 45-54 Male (Patient) 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.

Comment from: Boosmom, 3-6 Male (Caregiver) Published: September 09

We were told there was a possibility that our son would have sickle cell before his birth. I began to research the disease before his birth. At 8 weeks it was confirmed that he had SS. My son is now five and he has a great team of providers (Hemotologist, Pediatrician and Hospital). They all say that the parent's knowledge and being proactive is key to our son's quality of life. He is currently on Penicillin, Folic Acid, Hydroxyurea and baby aspirin. Our hospital's patient advocacy program works with the school to ensure that missed days do not count against him and that he receives his assignments or tutoring when required. We also show/tell him how important it is for him to exercise, drink plenty of water, rest and eat right.

Comment from: Nicole2010, 19-24 Female (Patient) Published: March 22

I am now 24 years of age and I have SC disease. I have a lot of issues due to the ignorance in not knowing in detail about having sickle cell. I started my crisis when I was 13 years of age. I was a cheerleader and I was unable to lift my legs and arms due to a crisis. I began have 104+ fevers and I was unable to walk for 1 1/2 weeks. My sister actually had to teach me to walk again due to my bones and the pain. I was began to get sick with 104+ fevers after that and missed school. Playing catch up was my life mostly. When I turned 20 I started having multiple issues with my spleen due to a flight to Savannah, GA and I began to get flu like symptoms for a week and once I returned home to TX I was rushed to the ER due to me not being able to stand up straight and the pain that made me fall to my knees. I was told my spleen was dying and until the doctors felt it needed to come out I would be on pain meds and needed more fluids than the average SC patient. I have had multiple issues with pain in my arms and legs, back and breathing issues. I am now on an inhaler due to my breathing. I have headaches like crazy, but I'm researching all over to make sure I'm doing everything correctly. The only advice I have for anyone with sickle cell disease is to make sure you and your family are aware of what it is and what it could lead to. My family is still ignorant about sickle cell disease and they don't truly understand how serious the matter can and will be. I have taken myself to the hospital mostly since I was 17. Make your family understand.

Comment from: Billibo, 45-54 Female (Patient) Published: September 11

I am 45 years old and was diagnosed with sickle cell anemia (SC) when I was five years old. For me childhood and young adult were the most difficult times. That's when I had the most crises. I was never hospitalized, at that stage, but I missed a lot of school days and was always playing 'catch-up'. I had my first child at 29 years old. Three months later I was diagnosed with aseptic necrosis at the left hip. I have only just now been diagnosed with bleeding in the eye and require laser treatment. I must say that I have been blessed, because I have only needed to be hospitalized about four times because of painful crises. Other times I am treated at home (maybe it's because of my dislike for hospitals that I am not there more often) and also I think my pain threshold is high. I have gone for years without having a crisis. My necrosis does not bother me a lot. Sometimes I forget about it until I feel a little twinge or something. At other times I can barely walk, but still I go on because the good times are a whole lot more than the bad times. I do try to eat right and have plenty fluids and rest (sleep). I live in Jamaica so I don't have to contend with extreme cold (except A/C in some offices). I try not to physically exert myself too much as I find that this can bring on a crisis as well. I have had medical doctors look at me and try to convince me that I am not a 'sickler' because they say I do not present like the typical sicker...I look healthy. I don't know, am I just extremely fortunate?


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Patient Comments & Reviews

The eMedicineHealth doctors ask about Sickle Cell Disease:

Sickle Cell Disease - Treatment

What was the treatment for your sickle cell disease (sickle cell anemia)?

Sickle Cell Disease - Symptoms

What were the symptoms of your sickle cell crisis?

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