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#1 of 11 Old 09-03-2011, 12:16 AM - Thread Starter
 
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I've been a member of these forums for a really long time.  You guys have gotten me through some extremely traumatic events including 5 pregnancy losses.  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: http://signon.org/sign/keep-politics-out-of-1.fb1?source=c.fb&r_by=527597.

 

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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#2 of 11 Old 09-03-2011, 12:31 AM
 
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I've signed & posted it on my social media sites. I hope you are able to get the surgery very soon.


mom to all boys B: 08/01ribboncesarean.gif,  C: 07/05 uc.jpg, N: 03/09 uc.jpg, M: 01/12 uc.jpg and far too many lost onesintactlact.gifsaynovax.gif

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#3 of 11 Old 09-03-2011, 11:53 AM - Thread Starter
 
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Thank you SO much for signing and reposting!  I appreciate it more than I can say! :)

 

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#4 of 11 Old 09-06-2011, 05:55 AM
 
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I'm concerned about one thing here.  The signing of petitions online are not very useful.  Of course it's a big deal now to do them but they do not garner the same respect and acknowledgment as say a letter to your congressman.   It would be quite a bit more effective if instead of a "signature" that generally can not be verified, you write a letter.  As in everyone that wants to particepate writes a letter.  Otherwise slacktavisim is rather distasteful.  Not useful and really does absolutely nothing. 

 

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#5 of 11 Old 09-06-2011, 06:04 AM
 
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I'm moving this to Activism for more responses.

Mi vida loca: full-time WOHM, frugalista, foodie wannabe, 10+ years of TCOYF 

 

R-E-S-P-E-C-T spells BRAND NEW User Agreement!!

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#6 of 11 Old 09-07-2011, 12:38 AM - Thread Starter
 
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Quote:
Originally Posted by Imakcerka View Post

I'm concerned about one thing here.  The signing of petitions online are not very useful.  Of course it's a big deal now to do them but they do not garner the same respect and acknowledgment as say a letter to your congressman.   It would be quite a bit more effective if instead of a "signature" that generally can not be verified, you write a letter.  As in everyone that wants to particepate writes a letter.  Otherwise slacktavisim is rather distasteful.  Not useful and really does absolutely nothing. 

 



I appreciate your concern and you do have valid points but very few people will write a letter as opposed to signing a petition.  It's a place to start and in 4 days we have over 400 signatures.  It's starting to garner interest by some large activism groups.  Both of my US Senators know about me and my case and they want to help.  This will give them at least something to work with and, when you don't have other options, you do the options you have.  I'm going to die without this, plain and simple.    While I'm not afraid to die, I want more time with my husband and I want to "give back" and raise awareness of both my genetic condition and regenerative medicine.  There are treatments being done now in regenerative medicine that aren't really known about and the amazing potential it has needs to be known.  It can give hope to a lot of people. 

 

I'm so grateful for people taking the time to sign.  <3

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#7 of 11 Old 09-07-2011, 12:38 AM - Thread Starter
 
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Originally Posted by Mosaic View Post

I'm moving this to Activism for more responses.


Thank you!! I appreciate it so much. :)

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#8 of 11 Old 10-22-2011, 03:57 PM
 
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I signed the petition.  I really hope you get the surgery you need and I hope that this allows others to get help that they need.


 
 

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#9 of 11 Old 12-16-2011, 11:46 AM
 
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Signed and e-mailed to family. My mom will probably shoot this to her prayer chain. Good luck, hon!

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#10 of 11 Old 12-17-2011, 08:56 AM
 
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My son was diagnosed with EDS last year.  Sorry to hear about what you are going through.  Keeping you in my thoughts.

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#11 of 11 Old 12-18-2011, 10:19 AM
 
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I see you are in VT, I am right over the border.  My good friend has EDS along with Chiari malformation.  I would love to put you guys in touch if that would be helpful to  you.  hug2.gif


M,partner to D,mama to Sofia (6/01), Madeline(11/04), and Quin(2/08)  Hoping for a tubal reversal baby SOON after the proceduremakebabe.gif

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