Good day fighter! May almighty God give you strenght and power to fight and conquer this disease. I heard that bone marrow help in curing sickle cell disease. Has anybody try or think about this option?. I have read some success stories about the transplant, although it is expensive but it really worth the financial sacrifice.
no offense to you or anybody that wants/had one but.... fck that transplant, I look at sickle cell not as an ailment but a teacher, a constant obstacle, what doesn't kill you only makes you stronger, I can't imagine my life w/o sickle cell, if i didn't have it, i'll definately wouldnt be the person i am today, and im proud of what ive had to deal with and survive in order to be here now.
I have a friend that got his daughter cured through BMT. He said that it cost his insurance company close to 1 million dollars for the whole thing, and he just happened to have a really great insurance plan, that's why they were able to afford it. However, he told me that there are alot of organizations that will help to support those that cannot afford the BMT. They do BMT also for kids with leukemia, so there are several points of aid. He stated that he and his wife got an apartment paid for the whole 18 months they lived in Oakland doing the treatment by one of these organizations (I think it was the Ronald McDonald Foundation).
His wife wasn't working, but he had to maintain his job full time to keep with the insurance plan. They had Kaiser insurance. He said that at times the paperwork was overwhelming, but he was determined to get his daughter cured no matter the cost. The whole process from when they started to when they got her out of the hospital and home was 18 months. She was 2 years old when they did it. Now she is 4, doing well, and having no negative repercussions whatsoever. Her brother was her bone marrow donor...a 75% match.
He chose to do it because he couldn't fathom having his daughter sick for the rest of her life. She was having crises about every 3 months at this point. He had seen a close friend with sickle cell live a life of constant pain and he didn't want this to happen to his daughter. He got alot of support from his family and church family, and even though several points in the process, he wanted to give up he kept pressing on in faith.
It is a huge decision to make. If you want, I can give you his contact info if you would like to speak with him. He's Nigerian too.
Hello sickle cell warrior, can you please give me the number of the Nigerian that got BMT done for his child. I heard that they do the procedure at Child care of Atlanta. Have a great weekend.
Permalink Reply by Vera on August 30, 2009 at 1:42pm
I followed the story of a Ugandan girl in the U.S who had a transplant.Her brother was the donor.Its been almost a year after the transplant and she's doing so well.
The transplant cost over $200,000.Its much cheaper in India.A fifth of what it costs in America.
@Sickle cell warrior,i would like to have his contact too
Permalink Reply by Nina on August 31, 2009 at 12:02am
Yes, I actually head that the only help for cure SCD is BMT. I could go trough this if I feel that despite anything I'm doing my son will be very ill. I can't even imagine seem him at the hospital and doing all this crazy process they do there. But I can go this way only if my child will be really at risk to have a miserable life, because the procedure by itself has its risks and I think we have to be 100% sure about it.
In the city I was born in Brazil the medical doctors recommend the transplant only when the SCD patient have already some complication, like leukemia or something like that.
The other point I want to make is that I really believe in stem cell research, and I could go trough all the artificial fertilization process, if it's the case, to help my son.
Hi guys, I found this another web site look at this http://www.viacord.com/special-transplant-programs.htm