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Proteus Syndrome Patient Brochure

What you need to know about Proteus Syndrome

Proteus Syndrome Foundation
609 East Mount Vernon Drive
Blue Springs, MO 64014
(816) 229-9132
Web site:

What is Proteus Syndrome?

Proteus Syndrome is condition which involves atypical growth of the bones, skin, head, and a variety of other symptoms. This condition was first identified by Michael Cohen, Jr., DMD, Ph.D., in 1979. In 1983, a German pediatrician, Has Rudolf Wiedemann, named it Proteus Syndrome, for the Greek God Proteus "the polymorphous" presumably because of the variable manifestations in the four unrelated boys first identified with the syndrome.

At this time, it is unknown how many individuals have Proteus Syndrome, since not all individuals are reported in the medical literature. However, there are over 50 reported cases worldwide. Reported cases have been isolated occurrences in families, suggesting that the condition is not hereditary. It affects both sexes equally, and has no particular racial, geographical or ethnic distribution.

Proteus Syndrome is an extremely variable condition. The severity of the syndrome ranges from mild cases to severe. There is, as yet, no way to detect who will have a mild case and who will develop serious complications.

While evidence of this syndrome has been cited in medical literature as early as 1907, recognition has been difficult due to the variability of the manifestations and the rarity of the syndrome. It has been suggested that Proteus Syndrome is the condition that Joseph Merrick (known as the Elephant Man) had, rather than neurofibromatosis, as was initially suggested.

What are the common signs of Proteus Syndrome?

Medical Advisory Board

Michael Cohen, DMD, PhD
Dalhousie University, Halifax. Nova Scotia, Canada
Robert J. Gorlin, DDS
University of Minnesota, Minneapolis
R. Neil Schimke, M.S.
Clinical Geneticist
University of Kansas Medical Center, Kansas City
Debra L. Collins, M.S.
Genetic Counselor
University of Kansas Medical Center, Kansas City
Mary Nagy, M.D.
Lenexa, Kansas

Proteus Syndrome Home Page - /gec/support/proteus.html

Contributions Welcome!

Proteus Syndrome foundation is a not-for- profit voluntary organization, and it's ongoing existence is dependent on donations from families, professionals, businesses, and other organizations. We are currently raising funds for our first national meeting for families and professionals. We also need funds to develop educational materials and for mailing expenses to send information packets to new families and health professionals.

Your input into fundraising activities is welcome. Please contact us if you are interested in organizing or contributing to a fundraising event.

For additional information, please fill out and return the following:

Information Form

Name _______________________________
Home phone___________________
Work phone___________________
Address ____________________________
City ________________________________
State _____ Zip code_________
Country (if not USA) _____________
e-mail: _____________________________
Occupation: _________________________
Individual with Proteus Syndrome's name: _________________________
___ Child (age ____ )
___ Adult
I am interested in:
____ Receiving a new parent packet
____ Networking with other families
____ Receive the Newsletter
____ Helping maintain the database
____ Helping develop internet resources
____ Contributions to newsletter
____ Other _____________
For Professionals:
____ Serving on Medical Advisory Board
____ Writing articles for newsletter
____ Editing educational materials
____ Other _______________
A $10 donation, to support newsletter mailings, brochure printing, and national meeting is appreciated.

The Proteus Syndrome Foundation was founded to educate, support, and raise money for grants and research toward finding a cure for children like Alex.

Contributions may be sent directly to the Proteus Syndrome Foundation.

The Proteus Syndrome Foundation's efforts are dedicated to the loving memory of Patrick Conlin King March 24, 1987- October 9, 1992

To locate a genetic counselor, or clinical geneticist in your area:

Link that takes you to the Genetic Support Groups  Link that takes you to the Genetic Professional Home Page  Link that takes you to the Genetics Education Center Home

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor,


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