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Scleroderma Talk

 
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Friedman is instrumental in the founding of NJSCREF, a foundation for the educating of the public and research into stem cell transplants.  Although he is still a practicing physician, his work takes him all over the country, speaking to physicians, and testifying in front of legislatures to help get these techniques to the public as quickly as possible.

There are still plenty of doctors out there who are against a stem cell transplant.  I asked Friedman about that.  He said it was the same when solid organ transplants were emerging.  Doctors want to see some results before they sign on.  I know that to be true:  My rheumatologist and pulmonologist did a complete turn around when they saw me this past autumn.  They could not believe the difference.  My color before I went for the transplant was gray /  green.  Now, it is pink.  You cannot argue with that.

I would not blame you if  you were worried about the mortality rate.  But the mortality rate is zero in this particular trial..  There are now 15 transplantees, and all are alive and improving, and off oxygen.

My latest CAT scan shows no change in a year.  This is wonderful news.  Traynor told me the symptoms would be arrested.  The echocardiogram shows that there is no measurable pulmonary hypertension.  This is great news. I can now begin to wean off the Tracleer.  The 6 minute walk is not as hopeful.  At this point, after 6 minutes my O2 is low and the dr. would like O2 supplement.  I don't know if this is all I am going to get or not.  But, compared with this time last year, I'll take it.

If you decide this might be for you there is a flier here that has pertinent information.  If  you have any questions of just want to talk or vent, you can go to my website, www.allmystemcells.com and email me.  I will respond, as several of you know.  Send this information to whomever you think will benefit from it.

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  Jane Erickson lives in New Jersey. She had a stem cell transplant in August of 2005 to quell the ravages of Systemic Scleroderma   She is  1 of 11 people nationally to have participated in the ASSIST trial over a three year period. She can be reached  by email advocate@allmystemcells.com