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Re: [IP] Re: ABC News (islet transplant)

I attended the same TCOYD conference in Seattle that
Sylvia mentioned (in fact, we went together). I don't
remember all the details of the woman's speech (her
name was Gloria Sayler, by the way) but when that part
of the conference was over I distinctly remember saying
to Sylvia, "If that is success, I don't want it for
Shannon." I was very disheartened by her experience
although I had gone in with total excitement to hear
about it. This woman not only has to take many daily
medications/anti-rejection meds, but also insulin
(because it wasn't a total success). It was a success
as far as her body accepting the cells but not a total
success as far as her going off insulin (she didn't
receive enough islets). Her diabetes control was
slightly improved but at what cost? Now she has to be
very careful due to germs and side effects (of
anti-rejection meds), whereas that wasn't a concern
before. Needless to say, I was not impressed and will
gladly stay with pumping. I don't know if Sylvia picked
up on it but you could hear the disappointment in her
voice (it came across like "now I'm stuck with my feet
on boths sides of the fence", like she got the short
end of the stick. She didn't just trade one regimen for
another, she went back to what she was already doing,
and then some.) The only thing she seemed upbeat and
positive about was that she was furthering research,
which I applaud and commend her for. Without some
failures and not-total-successes (such as this one),
the methods won't ever improve.

Roxanne said:
The researcher that spoke at our meeting was Dr.
Kristina Rother (Senior
Clinical Staff Investigator, Transplant and
Autoimmunity Branch, NIDDK, NIH)
When she spoke (May 3, 2002), there were only SIX
people, all women, who had
received the transplants.  ALL six were off of insulin
injections, and of
course being followed VERY closely.  A transplant
recipient also spoke to us,
and she has been off insulin completely for a year now.

In addition, I attended a meeting with Dr. Allen
Spiegel, Director of NIDDK
of the NIH on May 11, 2002, in Canton, Ohio who also
presented SIX patients
all of whom were off of insulin injections.  I do
believe that Dr. Spiegel
would have the correct information.
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