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

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

Comment from: wildcardma55, 45-54 Female (Patient) Published: February 24

When I am going thru a crisis, sometimes the medical community treats me like a drug addict. All I want is the pain to stop. As I have gotten older(54),it seems I am having sideline problems(severe back, hip, arm and leg pain)and my primary physician won't prescribe anything but Tylenol 3's(which don't work). I do go see a medical oncologist, but those visits are far and few. I would like to understand it more and would love to find out how I can manage my pain better. When I was at the doctor's the other day, I was told by one of the physicians, that they were going to start me on the hydroxyurea, but reading up on this medication has scared me to death and from others who have the same condition as I, it sounds as if the side effects are horrible.

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Comment from: Billibo, 45-54 Female (Patient) Published: June 03

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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Comment from: 25-34 Female (Patient) Published: June 03

I am a 32-year old African American female with sickle cell (SS). My experience has been generally good. I suffered with crises mostly in my teens and early 20's. I find that 'triggers' (cold, wet, stress, infection) vary for each sickler and it is best to know your own triggers to help in pain avoidance or management. In my 30's the frequency and severity of the disease has decreased. I find that a balanced diet, lots of daily fluids, vitamins and rest help greatly. The herbal supplement of garlic helps me personally (possibly because it thins the blood slightly so it can flow easily). The disease is very manageable and need not be frightening or life-threatening. I have no children yet and have concerns/fears about pregnancy complications however I am encouraged by the stories of other sicklers.

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Comment from: lukhan77, 25-34 Female (Patient) Published: April 22

I am a 32-year-old African American who has sickle cell anemia. All my life I have struggled with this disease. It's very painful when you have a pain crisis. One time that I can remember is when I went to the emergency room and they gave me two rounds of pain medicines that didn't help. I was told that it's impossible to still be in pain. They discharged me and said that I was a junkie. I couldn't believe what I was hearing. I tried going to another emergency room and had to wait more than four hours to be seen. Since then, I have relocated to Tennessee, and the care that I receive here is overwhelming. I have never seen such great medical staff that takes the time to understand what I'm going through. I have three healthy children. What I have learned the most about having this disease is not to let your sickness get the best of you. Drink plenty of water. Exercise daily, even if it's just a walk in your neighborhood. Join a support group in your area; it really helps to be round people who understand your pain and don't judge you for being an outsider. One thing that I struggle with more than anything is holding a job. I start out good, but my attendance affects other co-workers, so I get let go.

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Comment from: skinnyminny, 35-44 Female (Caregiver) Published: January 13

We have recently buried my father, a sickle cell anemia sufferer for many years. He passed away on Jan. 8, 2010, at the age of 67. He lived a long and productive life, despite the many hospital visits. His faith in God, an extremely healthy diet, and unwavering family support allowed him to live to such a ripe old age, all things considered. To all those who are at the beginning, middle, or end of your journey, look to a higher power, as I have and continue to do so. I have just had a niece (8 years old) diagnosed with sickle cell disease five months ago. And it begins all over again

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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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