Sickle Cell Disease is No Joke - Part I
Children at camp, smiling faces, wiggling bodies moving to the beat of the latest dance, that's what you see from Camp Crescent Moon, it's our way of looking on the bright side of sickle cell disease, it's our way of being in denial. But today we have to tell you what many of you already know, "sickle cell disease is no joke, it can be a cruel, relentless, destructive disease".
The Christmas season has begun and the Sickle Cell Disease Foundation of California is participating in its annual toy and gift card drive. I'm going to tell you about three families who will have a very difficult time this Christmas. No amount of toys or good wishes will lessen their grief for they have lost a loved one to sickle cell.
The first family lost their six-year-old son. He was to receive a bone marrow transplant from his baby brother. Luckily the young brother was a match and the parents and doctors thought that the transplant would spare their son from the ravages of the disease, the pain crises and potential strokes. During the transplant something went wrong and after 27 days of pain and fever the child died.
The second family had brought their son through the difficulties of childhood and adolescence. He had begun to live on his own, but like many young adults with sickle cell, he died after the transition to adult care. Like many young adults, he thought he was invincible. He died at twenty-three.
The last family is that of our CEO Mary Brown. Her brother-in-law, Wayne Ragin has just lost his battle with sickle cell disease. Wayne was a graduate of Howard University and worked as a human resource specialist. He had three children, all college grads and worked as much as he could on the Obama 2008 campaign. Although he was able to lead a successful life, the last seven years have been crippling. Sickle cell disease can destroy every organ in the body and in Wayne's case it was his kidneys. He suffered through years of dialysis, both at home with his wife Patrice his caregiver, and at the hospital. The final assault came from a stroke and then cardiac arrest.
Other families are breathing a sigh of relief this year. The surgery to remove the spleen went well for one nine-year-old, and he is able to go longer between transfusions. Another young woman is doing well after her third hip replacement and literally months in the hospital and ER.
This is the good news but we have to ask, was there anything that could have lessened the suffering and lengthy hospital stays? Are we devoting enough time and resources to develop new treatments that can reduce the devastation of this awful disease? We ask ourselves these questions at the Sickle Cell Disease Foundation of California.
We want to
Sincerely,
Nancy Rene'
1st Vice Chair
Chair of the SCDFC Advocacy Committee
Sickle Cell Disease Foundation of California
The Christmas season has begun and the Sickle Cell Disease Foundation of California is participating in its annual toy and gift card drive. I'm going to tell you about three families who will have a very difficult time this Christmas. No amount of toys or good wishes will lessen their grief for they have lost a loved one to sickle cell.
The first family lost their six-year-old son. He was to receive a bone marrow transplant from his baby brother. Luckily the young brother was a match and the parents and doctors thought that the transplant would spare their son from the ravages of the disease, the pain crises and potential strokes. During the transplant something went wrong and after 27 days of pain and fever the child died.
The second family had brought their son through the difficulties of childhood and adolescence. He had begun to live on his own, but like many young adults with sickle cell, he died after the transition to adult care. Like many young adults, he thought he was invincible. He died at twenty-three.
The last family is that of our CEO Mary Brown. Her brother-in-law, Wayne Ragin has just lost his battle with sickle cell disease. Wayne was a graduate of Howard University and worked as a human resource specialist. He had three children, all college grads and worked as much as he could on the Obama 2008 campaign. Although he was able to lead a successful life, the last seven years have been crippling. Sickle cell disease can destroy every organ in the body and in Wayne's case it was his kidneys. He suffered through years of dialysis, both at home with his wife Patrice his caregiver, and at the hospital. The final assault came from a stroke and then cardiac arrest.
Other families are breathing a sigh of relief this year. The surgery to remove the spleen went well for one nine-year-old, and he is able to go longer between transfusions. Another young woman is doing well after her third hip replacement and literally months in the hospital and ER.
This is the good news but we have to ask, was there anything that could have lessened the suffering and lengthy hospital stays? Are we devoting enough time and resources to develop new treatments that can reduce the devastation of this awful disease? We ask ourselves these questions at the Sickle Cell Disease Foundation of California.
We want to
- improve the lives of patients and families afflicted with sickle cell disease
- provide additional education and training for doctors and nurses through local and national conferences
- provide education and awareness to the general community who may be at risk to have a child with sickle cell disease
- encourage young adults to obtain regular medical care when even if they are not in pain
- advocate for better medical care, awareness and education on sickle cell disease and sickle cell trait, and lastly
- we want to provide support for families that know first hand that "Sickle Cell Disease Is No Joke."
Sincerely,
Nancy Rene'
1st Vice Chair
Chair of the SCDFC Advocacy Committee
Sickle Cell Disease Foundation of California
Sickle Cell Disease is No Joke - Part II
After last week's letter, Sickle Cell Disease is No Joke, we got a number of responses asking what can I do?
All of the programs that might help people with the disease: educational outreach, better training of medical personnel, and research, take money. Our small office staff can barely scratch the surface of the work that needs to be done. The same can be said of most of the sickle cell organizations across the country, we don't have the money we need to really make a difference.
You see it all the time in bigger charities. We all remember everything that was done for breast cancer awareness, the pink shoes worn by football players, the walks that seemed to happen in every park, talk show appearances by big stars and athletes; all of that took money, lots and lots of money.
Sickle cell disease affects far fewer people than breast cancer, heart disease or stroke. It's no surprise then that many people have not heard of it. For us to have a successful fundraiser, we need first of all to get the message out. Sickle cell is a life-long genetic disease. We have made much progress in increasing life-spans and decreasing pain crisis, but we have a long way to go. People are still suffering and dying needlessly.
Right about now, you may be thinking, I know they need money, but I can only give five dollars, and five dollars won't help.
Think about it this way. Suppose you contact ten friends and ask them to each give five dollars. They can go to our website, www.scdfc.org and find our about our programs and how to donate. Now your five dollars become fifty and if ten more people reading this letter did the same thing, we'd have five-hundred dollars to work with.
Five hundred dollars could pay the printing costs for a small conference for parents, it could pay for coffee and pastries so everyone would feel welcome. Five hundred dollars could help for soap, paper towels, bottled water or other supplies for our kids at Camp Crescent Moon.
True, these are small things but they matter. It all starts with you and your friends. Please help us. Together we can make a difference for everyone with sickle cell, children, adults and their families. Remember Sickle Cell Disease Is No Joke.
Sincerely,
Nancy Rene'
1st Vice Chair
Chair of the SCDFC Advocacy Committee
Sickle Cell Disease Foundation of California
All of the programs that might help people with the disease: educational outreach, better training of medical personnel, and research, take money. Our small office staff can barely scratch the surface of the work that needs to be done. The same can be said of most of the sickle cell organizations across the country, we don't have the money we need to really make a difference.
You see it all the time in bigger charities. We all remember everything that was done for breast cancer awareness, the pink shoes worn by football players, the walks that seemed to happen in every park, talk show appearances by big stars and athletes; all of that took money, lots and lots of money.
Sickle cell disease affects far fewer people than breast cancer, heart disease or stroke. It's no surprise then that many people have not heard of it. For us to have a successful fundraiser, we need first of all to get the message out. Sickle cell is a life-long genetic disease. We have made much progress in increasing life-spans and decreasing pain crisis, but we have a long way to go. People are still suffering and dying needlessly.
Right about now, you may be thinking, I know they need money, but I can only give five dollars, and five dollars won't help.
Think about it this way. Suppose you contact ten friends and ask them to each give five dollars. They can go to our website, www.scdfc.org and find our about our programs and how to donate. Now your five dollars become fifty and if ten more people reading this letter did the same thing, we'd have five-hundred dollars to work with.
Five hundred dollars could pay the printing costs for a small conference for parents, it could pay for coffee and pastries so everyone would feel welcome. Five hundred dollars could help for soap, paper towels, bottled water or other supplies for our kids at Camp Crescent Moon.
True, these are small things but they matter. It all starts with you and your friends. Please help us. Together we can make a difference for everyone with sickle cell, children, adults and their families. Remember Sickle Cell Disease Is No Joke.
Sincerely,
Nancy Rene'
1st Vice Chair
Chair of the SCDFC Advocacy Committee
Sickle Cell Disease Foundation of California