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Stem Cell Transplant

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4 replies to this topic

#1 racmc



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Posted 02 August 2010 - 12:12 PM

I am considering a Stem Cell Transplant soon. I would really appreciate hearing from anyone who has had one or from their families. Thanks.

#2 Jeannie McClelland

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Posted 02 August 2010 - 12:30 PM

Hi racmc,

Welcome to the Forum. We have a fair amount of information on the site about Stem Cell Transplant (SCT). This page will take you to clinical trial results from the various types/trials of SCT's. If you do a search in both the Forums and the Main ISN Site (the search boxes are at the top of the pages), you'll get links to articles AND personal stories. We've had several members who've undergone SCT with varying degrees of success. It's not a procedure to be undertaken lightly.

I hope you'll post often and let us get to know you.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 CraigR


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Posted 02 August 2010 - 02:00 PM

I had a stem cell transplant (autologous, meaning your own stem cells, not a donor's) in January 2003. However, it was for lymphoma. I have sclero (CREST). It did not seem to affect the scleroderma, but mine is of slow onset, so not as seriously and immediately threatening.

In my research, I found that the "protocol" for stem cell transplant (SCT) for sclero was only indicated when the disease was very serious (life threatening), because of the high risk involved (10 to 20% mortality). But that was seven years ago.

Good luck,


#4 Shelley Ensz

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Posted 02 August 2010 - 02:09 PM


Welcome to Sclero Forums!

There are not very many people who have had stem cell transplants for scleroderma, because as Craig pointed out, they are reserved for those who have the worst form and fastest progression of systemic scleroderma. But as Jeannie explained, searching our forums in the search bar in the upper right hand corner will pull up some past threads about stem cell transplants that I am sure you will find useful. You can also reply to those old threads to more likely get responses on the topic, too.

Are you under the care of a scleroderma expert, yet?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Amanda Thorpe

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Posted 03 August 2010 - 06:56 AM

Hello Racmc

I wanted to welcome you to the forums and hope that you find the information you're looking for.

Take care.
Amanda Thorpe
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