I hope it's OK to post this here but I didn't see anywhere else to or problems with doing so. I've been a member of these forums for awhile, from reading about DirecTV for a year before we could get it (due to location) through our contract, enjoying every minute of it...I was even part of the MRV beta program. But now, I need your help to save my life.
I'm only 34 but found out I have a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). It causes the collagen & connective tissue in my body to be lax and not function properly. The problem is, our bodies are comprised of 30% collagen so it affects joints, skin, vital organs, veins, and the autonomic nervous system to name several. For me, it's caused my airways to fail. Top doctors in their specialties have said that they've never seen anything like it but my airways collapse 90% every time I breathe out. They close off completely a few times a day and I have to get assistance in reopening it within 2 minutes. Every treatment I've had has failed including 9 surgeries. Now, I have one chance left to save my life. It's an airway transplant that uses my own stem cells to grow the trachea and bronchial tubes so that there is no rejection. The surgery has only been performed by one surgeon in the world on a total of 11 patients, none of whom have the genetic disorder or airway collapse. The surgeon has agreed to take me as a patient and I'll be the first with my conditions and from my country to have this transplant.
However, there are some regulatory problems that are getting in the way because it involves the use of stem cells - even though they are my own and will be taken from my bone marrow. I have less than a year to live and already the procedure has been delayed six weeks because of red tape and government agencies. So, today, my husband started a petition to take to the senate to put pressure on the Federal agencies to not let government get in the way of healthcare. It only takes a few moments to sign and then any way that you'd be comfortable sharing the petition with people you know would be an amazing help.
Without the assistance of Community, I won't see the end of 2012.
You can sign the petition here: SignOn.org Beta
If you want to read more about my story or see videos of my airway collapse, newspaper articles, etc, you can do so at breathingcompanions.blogspot.com.
Thank you so much.
Rachel
I'm only 34 but found out I have a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). It causes the collagen & connective tissue in my body to be lax and not function properly. The problem is, our bodies are comprised of 30% collagen so it affects joints, skin, vital organs, veins, and the autonomic nervous system to name several. For me, it's caused my airways to fail. Top doctors in their specialties have said that they've never seen anything like it but my airways collapse 90% every time I breathe out. They close off completely a few times a day and I have to get assistance in reopening it within 2 minutes. Every treatment I've had has failed including 9 surgeries. Now, I have one chance left to save my life. It's an airway transplant that uses my own stem cells to grow the trachea and bronchial tubes so that there is no rejection. The surgery has only been performed by one surgeon in the world on a total of 11 patients, none of whom have the genetic disorder or airway collapse. The surgeon has agreed to take me as a patient and I'll be the first with my conditions and from my country to have this transplant.
However, there are some regulatory problems that are getting in the way because it involves the use of stem cells - even though they are my own and will be taken from my bone marrow. I have less than a year to live and already the procedure has been delayed six weeks because of red tape and government agencies. So, today, my husband started a petition to take to the senate to put pressure on the Federal agencies to not let government get in the way of healthcare. It only takes a few moments to sign and then any way that you'd be comfortable sharing the petition with people you know would be an amazing help.
Without the assistance of Community, I won't see the end of 2012.
You can sign the petition here: SignOn.org Beta
If you want to read more about my story or see videos of my airway collapse, newspaper articles, etc, you can do so at breathingcompanions.blogspot.com.
Thank you so much.
Rachel
Last edited:
