Hypophosphatasia-L Archives

Archiver > Hypophosphatasia > 1998-08 > 0902852955


From: "Margery Callen" <>
Subject: [Hypophosphatasia-L] Contact for Fellow Hypophosphatasians
Date: Tue, 11 Aug 1998 12:29:15 -0400


Hi Everyone — Message from Marge

I checked again this morning the MMRL Open Message Forum to recheck just
what Nancy Schott and William Janzee had to say. Of course, you remember
them Tracey because your insertion is listed after theirs. William's
family is of Dutch origin and has a 4 year old child who has been diagnosed
with Hypophosphatasia. Nancy is 50 years old. She writes "Today I went for
my third alkaline phosphatase blood test because my level keeps being
elevated. My doctor keeps telling me its no biggie, but I don't know why
then we keep testing it. I found this when I looked around on the
internet. I can't find a good definition of this disease. I guess that
its a hereditary bone disorder, but no one says what the symptoms are.
Could someone please enlighten me?" It is great, Tracey, that you left a
message on MMRL that they can contact the Magic Foundation—the information
is certainly there.

Now if both William and Nancy had left their e-mail addresses, all of us
could answer their questions! I wish I could get all my names off the
MMRL as it looks rather ridiculous but, there you go. We have heard so
much of being spammed, I think that we are rather nervous that it will
happen to us. When you check the guest books on the internet, e-mail
addresses are there with most of the entries!

It appears to me, Tracey, that William and Nancy have not heard of Dr.
Whyte as the rest of us have. Most people who have this disorder end up
referring to Dr. Whyte, THE EXPERT. It appears to me when scanning through
the beautiful Magic Foundation Web site, and with the description that Dr.
Whyte gives on this disorder, that he could be connected with the
Foundation — am I right? I understand that you have seen Dr. Whyte in
person as I believe that Del has. Is it possible, with all the referrals
that he has had (certainly in his files) that he would have quite a listing
of Hypophosphatasians. Would one be overstepping the line to request from
his office a listing of these individuals who still would want to be in
contact with fellow Hypophosphatasians! Both Dr. Whyte in St. Louis and
Dr. Cole in Toronto, I understand, have child patients only.

I think, though, if we did get this listing that we would be deluged and
couldn't handle it. Oh, it's a thought anyway.

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