Proteus Syndrome

  • Definition
  • Common Signs
  • Diagnostic Criteria (I have a paragraph from NIH to go with this criteria)
  • Glossary
  • Videos

Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms. This conditon was first identified by Michael Cohen Jr., DMD, PhD., in 1979.

In 1983 a German Pediatrician, Hans-Rudolf Wiedemann, named it proteus syndrome, for the Greek God Proteus “the polymorphous” presumably because of the variable manifestation in the four unrelated boys first identified with the syndrome.

At this time there are over 120 documented cases worldwide. However, not all cases of proteus syndrome are documented, therefore it is unknown how many individuals have this syndrome.

The syndrome became widely known when it was determined that Joseph Merrick (the patient depicted in the play and movie “The Elephant Man”) had severe Proteus syndrome rather than neurofibromatosis as was initially suggested.

Upcoming Events

3rd Annual Swing For Sunshine
benefiting the Proteus Syndrome Foundation

July 18, 2014
Cheyenne Mountain Resort
Colorado Springs, Colo.

>> More Info


Alexander Hoag
In Loving Memory of
Alexander Hoag
7/5/90 - 9/20/99
"He did a lot in 9 short years."

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