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What is PXE?
Pseudoxanthoma elasticum (PXE) is a connective tissue disorder. It is a
genetic condition, manifesting itself in various systems of the body.
Patients usually present with skin lesions in the flexor areas: sides of the
neck, axillae, groin..., although these are absent in some people. Almost
all persons affected with PXE have angioid streaks, a calcification of
Bruch's membrane. Some patients experience cardiac and arterial difficulties
and gastrointestinal bleeding.
What is PXE International, Inc. ?
PXE International, Inc. is a non-profit organization established to support
research for PXE. It presently is engaged in developing an international
registry. Other projects include literature reviews for lay persons and
medical specialties, fundraising for specific research projects.
Our primary need is for doctors to tell their patients about us and urge those patients to contact us. Please consider helping us connect with all known persons affected by PXE.
PXE (pseudoxanthoma elasticum) International has a mailing list on the Internet. We have established this list to provide a place for people interested in PXE to discuss the disorder, its medical implications, advances in research and possible treatments.
To subscribe to the list one has to write a mail message to
majordomo@listserv.bc.edu and the body of the message should be
subscribe PXE username@host.domain
similarly
unsubscribe PXE username@hosr.domain
to get a list of participants
who PXE
Now to post to the list the message should be sent to PXE@listserv.bc.edu
If you know of any person affected by PXE please ask them to contact us through my internet address (Tshar@aol.com) or by snail mail: Sharon Terry, President/PXE International, Inc./23 Mountain Street/Sharon, MA 02067/USA/617-784-8006.