McCune-Albright Syndrome - The Syndrome and Our Story

Welcome to our site about McCune-Albright Syndrome.
Here you will find information, both clinical and personal,
about the syndrome and the things it involves. If you are like
me, MAS was a total surprise. I never dreamed that the cafe-
au-lait spots that I thought were just a cute birthmark on
my daughter signified anything unusual. I searched the
Internet and found only clinical information - then I found
the MAGIC Foundation page and was able to contact Annie
Miller whose daughter has MAS and had the same operation
as my daughter. Talking to a mom in the same situation as mine
really helped, and I hope through this site to be a help to others. If you or your child has MAS or FD, please go to www.fibrousdysplasia.org and join the listserv. This has been a life saver - the network of people with the same condition has been an invaluable help to us.

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Disclaimer: This site is not supported or written by medical professionals. All the
information contained within the directory of /mccune-albright/ has been researched
by me on the Internet and from written information sent to me by a foundation. If you
suspect your child has McCune-Albright Syndrome, please see a doctor. Do NOT jump
to the conclusion that your child has any rare disease without thorough testing - I can
say this since Hannah was supposed to have a pituitary tumor and possibly neurofibromatosis
before her final diagnosis. This site is intended only to give information for research,
and our personal story so that we may be able to help others that want a more human
side to a problem and know that there are others out here just like you!

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