My struggle to get stem cell treatment…
-
-
February 19, 2009 at 9:16 pm
-
February 19, 2009 at 9:57 pm
Alice,
Go to Jens story on Caring bridge. If you even just google Jenn’s story it should pop up. She will talk to you if you email her. She had it done at North Western Hospital in Chicago. Good luck!
Dawn Kevies mom -
February 19, 2009 at 10:27 pm
Alice,
I tried to get into the program but was turned back. I really think that this is the way forward for a cure to our situation.
Dick S
-
February 19, 2009 at 11:47 pm
Guys,
I’m new to the forum, so I’m not aware that there is a stem cell program for CIDP. Please, tell me more, or let me know where I can leran more. This is very promising news.
Pablo -
February 20, 2009 at 8:33 am
Pablo,
Check out the above site I mentioned. I do not know your condition, but at the symposium they did mention it is not to be taken lightly. You must have exhausted all other possibilities and be very bad off. There was a 12 y/o girl at the symposium that had it. The docs at the sympos. also mentioned that the transplant alone will not be the answer, you will have to be on cell cept or something like it to fight off rejection, as well you may have to be on it for a good period of time. There was some talk that the cidp can come back. I have spoken with Jenn and when we last spoke (a year ago) her results were most encouraging. If you contact her, she will respond, or at least she has in the past. Good luck.
Dawn Kevies mom -
February 20, 2009 at 1:20 pm
pablo, here is the link: [url]http://clinicaltrials.gov/ct2/show/NCT00278629?term=Chronic+Inflammatory+Demyelinating+Polyneuropathy+%28CIDP%29&rank=3[/url]
and yes, i have spoken with jen osman, the 1st to go through this trial– she is in remission several years out now– living a normal life.
you can also learn more about the treatment by going into the “links” page of my website…
[url]www.alicedicroce.com[/url]
best, alice
-
February 24, 2009 at 8:06 pm
Hi Alice,
Good Luck, I hope you reach your goals. –Tim–
-
February 24, 2009 at 11:52 pm
thank you tim for your generous donation–
i’ve been keeping track of you– you are doing pretty good yes?
alice -
February 25, 2009 at 1:23 am
Hi Tim,
How are you doing with the IVIG? Any improvement so far?
Laurel -
February 25, 2009 at 5:24 am
Alice/Laurel
All is as good as it gets. your welcome. I admire your Strength.–tim– -
February 25, 2009 at 3:25 pm
There is some new research being done that takes your skin cell and turns them into stem cell. That avoids the whole problem of rejections, since they are your cells. Hopefully this effort will continue and lead to more application. Right now it is just experimental.
-
