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Old September 3rd, 2011, 02:22 AM   #1 (permalink)
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Default I need your help to save my life.

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 Android devices a year before my contract was up, to enjoying all that Android has to offer. 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

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Old September 3rd, 2011, 04:40 AM   #2 (permalink)
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Best of luck with everything. I'm pulling for you.
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Old September 3rd, 2011, 01:54 PM   #3 (permalink)
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Thanks so much Gmash! I really appreciate it!
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Old September 3rd, 2011, 02:20 PM   #4 (permalink)
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I do wish you the best of luck, but I'd encourage you to circulate your petition locally and not online. Online petitions are practically worthless as I could easily create a bot that would sign your petition a million times. Signatures in person are much harder to fake in general, easier to verify and carry much more weight with the powers that be. I think your efforts will be more effective there. Again, I wish you the best of luck.
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Old September 3rd, 2011, 02:24 PM   #5 (permalink)
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Signed.

I genuinely hope this comes through for you, and wish you the best. I can only imagine how hard it is to deal with. Take care.
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Old September 3rd, 2011, 05:15 PM   #6 (permalink)
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Signed.

Sorry to hear about the tough road ahead of you. Stay strong and the best of luck to you.

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Old September 3rd, 2011, 08:44 PM   #7 (permalink)
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I'm sorry to hear about this.

Is there any other place besides where you live where this treatment could occur? I know it's a bit uneasy going to another country for treatments (especially ones that are not US approved (assuming you're in the US)), but it might be something to think about.
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Old September 3rd, 2011, 09:18 PM   #8 (permalink)
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Best of luck to you! I signed the petition, hope it helps.
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Old September 3rd, 2011, 10:46 PM   #9 (permalink)
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Thanks so much...I really appreciate you taking the time to sign. I'm trying to take it day by day but it gets hard to sometimes.
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Old September 3rd, 2011, 11:06 PM   #10 (permalink)
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Thanks so much...I really appreciate you taking the time to sign. I'm trying to take it day by day but it gets hard to sometimes.
Hang in there!
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Old September 3rd, 2011, 11:35 PM   #11 (permalink)
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Signed. Best of luck!
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Old September 3rd, 2011, 11:40 PM   #12 (permalink)
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Originally Posted by 9to5cynic View Post
I'm sorry to hear about this.

Is there any other place besides where you live where this treatment could occur? I know it's a bit uneasy going to another country for treatments (especially ones that are not US approved (assuming you're in the US)), but it might be something to think about.
What you pose is a very astute question. My surgeon is from Europe and works in Sweden, Florence, and Barcelona. We've been discussing where to do the surgery and for awhile is was on the table to do it in the US. This would have had a lot of benefit for me because some of the surgeons present in the surgery would be less than a days drive away and certainly easily accessible by medical air ambulance. That would have been great to have for any post op complications. But the hospital didn't want to work through all the red tape and my surgeon is coming to the conclusion that the regulatory problems will be much less of an issue (if at all) if the surgery is in Europe. However, he needs testing done to prepare for the surgery and that needs to be done here because I can't fly overseas on a commercial airline at this point. So we've had the schedule pushed back at least 6 weeks at this point just because of red tape and paperwork. They need to take stem cells from my hip to study and grow up a trachea to see if my genetic condition will affect growing the airways. Also my geneticist is having them studied for more info about my genetic disorder. There are government agencies that have held this process up despite amazing advocacy from my drs. So, the testing & research will happen here, once the agencies stop holding up the process with red tape and then I'll have to be flown to Europe on a medical flight, under general anesthesia intubated and on a ventilator, to have the surgery (if I fly a standard flight the pressure changes will collapse my airways and I won't be able to get them back open). But the red tape also has another direct bearing on the surgery as it affects the funding. It's going to cost hundreds of thousands of dollars for the surgery that we have to find a way to come up with & of course, even though they're my stem cells, it causes lots of problems in the US.

After they finish the research, the location in Europe will be decided upon. At least my surgeon will be at home and with his team and science around him so I think that it'll be the best chance for the surgery to go well. My surgeon told me that my primary thing to do is to stay alive until the surgery. I'm doing my best.

Thanks again everyone for all the support.
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Old September 4th, 2011, 12:09 AM   #13 (permalink)
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Stay strong friend.
I'm sure having the surgeon have a 'home field advantage' can only be a good thing.

Did they give you an estimate on the time frame for the research?
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Old September 4th, 2011, 08:20 AM   #14 (permalink)
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wow...

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Old September 4th, 2011, 08:25 AM   #15 (permalink)
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Gladly signed the petition and hoping things come around for you in the best way they can, varaonaid.. stem cell research is proving to be quite productive, downright amazing things happening!
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Old September 4th, 2011, 10:38 PM   #16 (permalink)
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Quote:
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Stay strong friend.
I'm sure having the surgeon have a 'home field advantage' can only be a good thing.

Did they give you an estimate on the time frame for the research?
Yes, once we get the paperwork through, they estimate 4-8 weeks - barring any other impediments or any problems found with my stem cells.

However, they are beginning to talk about an "emergency" plan...not that one is specifically formed but that we need one because of the rate of decline. Sometimes, I literally fight to get my airways back open and tell myself over and over "Don't Die!". I guess so far it's worked.

I may sound like I'm taking this lightly but the truth is, I don't think anyone who's in as tenuous a situation with their health can truly comprehend how dire their situation. You sort of become numb to some of it, taking in information almost as if it's about someone you don't know - just very matter of fact.

Great question.

Thanks so much everyone for signing!
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Old September 6th, 2011, 12:01 PM   #17 (permalink)
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Unbelievable.

I signed the petition.
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Old September 29th, 2011, 02:27 AM   #18 (permalink)
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Signed. Wow. Just wow. I will def think about this next time I feel like complaining about how 'hard' my life is....
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Old September 29th, 2011, 06:57 AM   #19 (permalink)
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Signed. Wow. Just wow. I will def think about this next time I feel like complaining about how 'hard' my life is....
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Old September 29th, 2011, 10:50 AM   #20 (permalink)
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Signed. Must admit with tears.
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