THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Tuesday, June 6, 1995 TAG: 9506060006
SECTION: FRONT PAGE: A14 EDITION: FINAL
TYPE: Letter
LENGTH: Short : 40 lines
Regarding staff writer Dave Addis' article (May 13) about a family raising money for the National Tuberous Sclerosis Association: While I am in complete sympathy with the family members' efforts and applaud them for helping with what is, indeed, an orphan disease, I feel compelled to correct some errors in information in the article which has caused distress on the part of many of the parents of my patients with tuberous sclerosis.
While tuberous sclerosis can be a devastating disease for both mental and physical development, and can cause significant cosmetic disfigurement as well, it should not be considered a ``lethal'' disease. There are no case reports of deaths directly related to tuberous sclerosis, and any risk would be from seizures which typically, in the beginning, are loss of muscle tone rather than the movements that people normally associate with seizures.
It is unfortunate that any physician would have told this family that this or any child would have a 50/50 chance of living, as this is both alarmist and false.
Additionally, TS is not related to multiple sclerosis in any way. They are completely distinct diseases with symptoms and causes that are totally different.
Finally, I would again praise the family for efforts in fund-raising but encourage members to seek the most accurate information before presenting it to the public as representative of an organization.
LAWRENCE G. LEICHTMAN, M.D.
Genetics/Pediatrics
Eastern Virginia Medical School
Norfolk, May 24, 1995
LawrenceGL(AT)aol.com by CNB