ALL IN THE FAMILY

Thank you very much for the fascinating and intriguing article “All in the Family.” I would like to correct an error in the information given about neurofibromatosis (NF), one of the most serious genetic neurological disorders.

Neither form of neurofibromatosis, NFI or NFII, is the Elephant Man’s disease. It is a well-established fact that the gentle, brave John Merrick suffered from an extremely rare disorder called Proteus syndrome. This erroneous label, the Elephant Man’s disease, has caused countless families with NF unnecessary emotional pain and fear as they struggle to accept and cope with this complex disorder.

Neurofibromatosis I is a common disorder, occurring in 1 of 4,000 births. However, it is frequently not diagnosed or is misdiagnosed. In California alone, it is estimated that more than 11,000 people have NF, although only 1,200 cases have been actually diagnosed. Education of medical professionals and the general population about the signs and symptoms of NF will result in early diagnosis and treatment.

CARLA HOUSER PARTMA

VOLUNTEER--L.A. REGION

CALIFORNIA CHAPTER, NATIONAL NEUROFIBROMATOSIS FOUNDATION

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