Local News - Living with Sickle Cell Anemia
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#1 Sep 6, 2007
Although I was pleasantly surprised to even see an article about Sickle Cell Disease, I was slightly disappointed. The focus always seems to be the effect of the disease on children. But no one ever points out the effects, the hardships, or the struggles that adults with the disease have.
The article itself points out that people are living longer with the disease. But there is never a focus on them. What support is available for them? My sister will be 48 this year. She has sickle cell disease. As I type up this comment, she is in the hospital going through what's called a Sickle Cell crisis. She has to have treatment (mainly blood transfusions and pain meds)about every other month. Her last stint was in June. It wasn't always this bad for her, but as she has gotten older the disease seems to get more aggressive.
This time her doctor had her go in because her red blood count was at 8.4. Healthy adult females usually have a count somewhere between 12 and 14. Unfortunately she has had to learn to function off of much less than that.
In between hospital stays she has to have multiple Emergency Room visits for pain. Doctors, no matter the hospital (and we have been to all of them in Jax)are always relunctant to treat her with what she knows will bring her out of her crisis. Many, on way too many occassions, have even labeled her (as well as many other adult patients) as drug seekers. If you have a patient with a disease whose only sympton is pain, how else are you supposed to treat it? A little common sense goes a long way.
My sister has never been able to hold a job. I remember as a child one day I wanted to race her down the street to the park (about 4 houses down). She went into a crisis. Just even walking around the mall will wipe her out for days. She has family support but nothing medically. It is very rare (for us in Jax) to come across a doctor who genuinely cares about and is willing to treat an adult (25 and older) sickle cell patient.
The next time you think about doing a story about this disease, try for a different spin. Speak with an adult who is coping with it. Ask their family the effect it has had on them. Children are cute. Young adults are admirable. But doing a story on someone who has battled the disease on their own with no support from the medical field is real. When you keep the focus on children you mislead America into thinking that they grow up happy, healthy adults, when in fact a vast majority of them die. Then no one realizes that there is a real need for the same type of attention, and maybe even legislation, that diseases like AIDS, HIV, and Cancer have.
My sister has Sickle Cell and I lover her dearly
#2 Sep 9, 2007
My genotype is SS too and i quite relate with Brandon's story. I have written a book on my experience of the disorder - Menace in my blood - my affliction with sickle cell anaemia ( www.trafford.com/04-2825
#3 Sep 9, 2007
i'm from lagos, nigeria. name, Ola tamedu
#4 Sep 24, 2007
greetings, I'm so happy that i am starting to read more and more about sickle cell! My daughter that is 19 years old has sickle cell and she is a college student at Xavier University of Louisana and have suffered with this terrible disease for 19 years. More need to be done and i'm just glad that i'm starting to read more and more about it. It's not HIV/Aids or Cancer so it doesnt get any notice. But, I believe and i have faith that there is going to be a break thru...lets keep getting the word out.
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