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[IP] Islet Transplants, Inulin Pumps & Initiative

     Hopping back on my "teacher soap box" today. I periodically send out 
"newsletters" to our Phila. area "Moms Brunch Bunch", an outreach network 
that has now grown to include over 200 families with children with diabetes. 
I thought these excerpts from my latest one might be helpful to the ongoing 
"thread" about islet transplants. In addition to my words, you can also check 
out http://www.jdrf.org/living_w_diabetes/feature/lif052902.php <A HREF="http://www.jdrf.org/living_w_diabetes/feature/lif052902.php">A New 
Reality: 8 Successful Transplant Patients</A>, which is the JDRF website link to 
a story about eight of the recipients of islet transplants. I have now heard 
three of these women speak, & although I share many of the concerns voiced in 
the current "ABC news" IP thread, there was no denying that for these 
patients, their life today is FAR better than the hell they'd been living, 
primarily due to hypoglycemic unawareness, despite the immunosuppressants, 
despite the side effects, etc.
(about the JDRF-Phila educational conference April 13th): 
Our second speaker was Dr. David Harlan from the NIH. Dr. Harlan offered a 
very candid & realistic explanation of the islet transplantation procedure, 
and the risks it entails. This is NOT a panacea, nor is it something to be 
cavalierly considered, UNLESS one's current life is so severely compromised 
by hypoglycemic unawareness & uncontrollable diabetes, that the benefits 
outweigh the risks. Interestingly, he also corroborated what I had heard 
previously: that the more than 70 patients who have now received islet 
transplants are strongly encouraged to maintain a controlled diet to avoid 
putting additional strain on their "neophyte" islets. This is most definitely 
NOT a "get out of jail free" card. 

That said, Dr. Harlan's message to the "masses" was crystal clear: until such 
time as islet transplants ARE "ready for prime time", it behooves everyone 
who lives with diabetes to do all that they can to optimize their care. Both 
he and Dr. Weinzimer advocated insulin pump therapy and frequent blood sugar 
monitoring as the ideal way to accomplish this goal. Pump therapy is NOT for 
everyone- but it does more closely mimic the normal pancreatic function. 
Their approach also echoes my own philosophy: i.e. it is IMPOSSIBLE to 
completely avoid high blood sugars, so it is counterproductive to berate 
ourselves or our children for those inexplicable highs ( the ones due to food 
consumed without insulin are a different story!). The goal is NOT to 
eliminate ALL high blood sugars - but rather to be cognizant of them through 
frequent testing & to shorten their duration by correcting with a bolus or an 
additional injection.

Having recently returned from reviewing JDRF research grants & ongoing 
research centers, I can reaffirm my personal belief that, in the absence of a 
cure TODAY for our children,  funding additional research is essential! 
Melissa has been on an ACE inhibitor for 5 years now, & not only are there 
studies corroborating its beneficial effect upon the kidneys, but many 
researchers are also hailing its apparent comparable effects on other 
microvascular areas in the eyes and the heart. The reason there is no cure 
YET is comparable to cancer research after all these decades: As my 
oncologist told my husband: the more they know, the more they realize how 
much more they need to know. However, that said, each "piece of the puzzle" 
serves to ameliorate, or even resolve, an existing concern. 
    Also, a few comments on the Glucowatch, which was reviewed at our 
educational conference April 13th, and which became commercially available 
for $600 on the 15th of April. My personal view is that it is a prototype, 
analogous to my husband's first "portable" company phone in 1987 which 
weighed 10 lbs, was carried in a small suitcase, and cost $1800. If you've 
seen pictures of the first pumps or the first glucose meters, the comparison 
is even more significant. I also understand "version 2" is already being 
tested in Europe.
     Lastly, for those of us who worry about another child being diagnosed, 
this week's New England Journal of Medicine reported the impressive success 
that Dr. Kevan Herold (who is Melissa's endocrinologist in NYC) has had with 
his early intervention clinical trial  in preserving residual beta cells. You 
can read about one of the participants in this link: <A HREF="http://www.ksl.com/dump/news/cc/feb00/diabetes.htm">Utah News from KSL-TV, 
Salt Lake City, Utah</A> http://www.ksl.com/dump/news/cc/feb00/diabetes.htm . 
This story is actually a year old, but I understand that additional 
participants in the past year have been equally successful & that a newer 
phase of the study is now underway.  <A HREF="http://www.jdrf.org/research/clinicaltrials/clinicaltrial4.php">How To Join A Clinical Trial</A> 
http://www.jdrf.org/research/clinicaltrials/clinicaltrial4.php is the link to 
the information. 
Renee (Melissa's pump mom)
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