Hypophosphatasia-L Archives

From: "Margery Callen" <>
Subject: [Hypophosphatasia-L] Hi Dana - this is a retry of a previous letter - It is by Plain Text
Date: Fri, 21 Aug 1998 13:47:33 -0400

Hi Dana — its Margery here.

I did not receive your message through Carol's mailing list but through
Carol sending your message to the list.

I do not know the word phosphoethanolamine—do you mean
phosphatidylethanolamine? I checked my Encyclopaedia Britannica 98 and the
second word was mentioned giving a long detailed explanation but I could not
see anything regarding normal values!!!

Regarding doctors—as you probably know (if you are connected with The Magic
Foundation) that Dr. Whyte is the known knowledgeable doctor regarding
Hypophosphatasia—he has many papers on this disorder. All of us eventually
end up referring to him in some way.

To find out if you actually have Hypophosphatasia you definitely have to be
diagnosed by having either blood testing or urine testing to see if you have
a low level of the enzyme alkaline phosphatase. If you don't have this done
you will be thinking you have something else as the symptoms are quite
varied—most doctors will be thinking you have a completely different
problem. Definitely your first move is to ask a doctor to check your
alkaline phosphatase value. That is a must.

Please keep in contact with us as we are all here for everyone's support.

All the best — Marge

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