Can you give me a bit more info on your experience. How long and how severe was your cidp? Where was this procedure performed. How long since procedure has made you syptom free? I'm sure others are interested. Thanks Johnz
John, I'm sending you my "script" on how to find info on SCT that I have
sent to others, but if you just want to know my story, go to the blog below!
Hope this answers your questions, but if you have more, feel
free to ask! P.S. I tried to "reply" to your email, but had no success. Kept
rejecting my replies. :(
Hi! There is so much to share, I'll do my best. There are quite a few
places I'm going to send you for information and links and blogs in regards
to the STC (stem cell transplant). If you are on Facebook, go to page named
"CIDP and stem cell transplant" and look under their "SCT Documents" for a
ton of info. Most of what else I'll share with you is on that page but I'll
tell you where to start. Go to the CIDP eligibility box to see if you
qualify. Then check out most of the other boxes as they catch your eye. I
have a blog on there of my history, story and medical procedure of SCT:
wendyssct.blogspot.com
You can also see Dr Burt (only US doctor that does transplants, in Chicago)
on You Tube, type his name in the search bar "Dr Richard K. Burt" and watch
as many as you can. He does a lot for MS, so you will see many talks about
MS but you can just about substitute CIDP in there instead!
I think this will give you enough "homework" to get started! If I can
answer any more questions for you, please don't hesitate to write and ask
or there are two good Facebook pages besides the one above that are more
active with people and support, they are: "CIDP Sharing Group" which is
closed and we will have to become friends first so I can add you, Wendy
(Jones Davis) Nash and "Hematopioetic Stem Cell Transplant - MS and
autoimmune diseases". The latter one has more MS patients/lingo in it but
very interesting and full of information on HSCT.
another place to look which is good is here:
http://www.stemcell-immunotherapy.com/
Best to you!
Wendy
John, I no longer do the Facebook thing for personal reasons but before I left the FB world I often visited a page Living with CIDP for support.The people on there are just amazing with encouragement and support and info and such. You'll have to get on there and check them out, I believe you have to be 'friended' in. Best of luck to you!!! ~Blessings, Char