The Congenital Nevus Support Group
PO Box 305 West Salem, OH 44287 (419) 853-4525 (405) 377-3403
web site: http://www.nevusnetwork.org email: firstname.lastname@example.org
Newsletter Number 9 September 17, 1996
N.N. Fights "Werewolf" Misinfomation
Nevus Network Fights "Werewolf" Misinformation
Many of you are aware of the little girl with a facial nevus who was quoted as having "human werewolf syndrome" by Dr. Adrian Lo, a plastic surgeon at St. Christopher’s Hospital in Philadelphia, PA. This story, filled with errors, was carried by the Associated Press and profiled by CNN on August 28, 1996. One of our members in Australia even saw it on their local TV!
The term "human werewolf syndrome" is medically incorrect. There is no mention of it in any of the 150 medical references we have in our files on giant nevi. This label is degrading and insensitive. The 18-year-old non-English-speaking teen mother appears to have been exploited for publicity reasons. One finds name-calling this bad on the playground or in the supermarket tabloids, but never by a doctor, hospital, or the mainstream media!
We contacted the persons involved and demanded a public apology. The AP reporter apologized for not verifying the accuracy of his information with another independent source, and the AP will publish another medically correct article on congenital nevi. Unfortunately, the hospital has not responded appropriately. The doctor ignored 2 telephone messages and 2 letters. The public relations representative at St. Christopher’s hung up the phone on us!
Nonetheless, we feel the incorrect use of the term "werewolf" by this doctor and the media needs to be stopped. We would like the hospital to receive an avalanche of letters objecting to it. Please write to the hospital, telling them how you feel about yourself or your child being branded a "werewolf." Feel free to ask us for appropriate addresses. Also please write your local newspaper and TV stations which carried the story. We already have enough problems in life coping with a nevus and living under the shadow of death because of it. We shouldn’t have to endure being called names like "werewolf" from a renegade doctor!
--The Editors BJ & Kelly
(Note: The AP published a corrected article on Nov 28, 1996. We gained about 30 new members as a result. Many were so joyful to find they weren’t alone anymore. The doctor never responded to us. The hospital responded by threatening us with a lawsuit.)
"A prejudiced person will almost certainly claim that he has sufficient warrant for his views." --Gordon W. Allport
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It is with very deep sadness that we must inform you of the death of Molly P. on August 3, 1996. Many of you may know Molly as “Doodles,” our first poster child. Molly would have been 4 years old on September 5 of this year.
Molly had a bathing trunk nevus which was too large for surgical excision. She developed seizures, forgetfulness, hydrocephalus (water on the brain), and neurocutaneous melanosis (nevus cells of the brain) last December, 1995. Tests were done but no melanoma was ever found. She had a brain shunt placed and did fairly well for a while. Then Molly developed a stroke on June 12, 1996 and fell into a coma. She had a feeding tube placed. She died at home with her parents at her side two months later on August 3. Our hearts go out to the family. Molly’s death is our third in the group.
With the help of her wonderful parents, Kelly and Doug P., Molly accomplished a great deal during her short lifetime of barely 4 years. Before Molly, we had no photos. Before Molly, a nevus was such a terrible thing that we could not look at it or ourselves. Molly changed all that. Because of Molly, we have photo exchanges and three bulging full Nevus Network photo albums. Molly helped us all with her courage. Very few people accomplish so much in so little time. Our prayers are with her and her family.
“No one dies who lives on in the hearts of others....”
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Join our group today!
There are no dues or fees to join. We are a completely private voluntary support group. We are also the oldest nevus support group in the world, going back to 1983. We rely entirely on donations and volunteers to meet the needs of the group. 100% of your donation funds group activities as we have no bureaucratic expenses. Because we are completely private, your donation is not tax deductible. Just send us your name, address, telephone number, e-mail address, and name, birthday, and medical description of the person with the nevus. Tell us you’d like some penpals and we’ll send you some! Feel free to sign up for our photo exchange. We provide the most up-to-date information on congenital nevi that we can find, all free of charge. Our group statistics are more extensive than any other source in the world thus far! When you join our group and provide your information, you will be doing your part to help make our group statistics even more accurate. All information is held in the strictest confidence. Anonymity offered. Please help us help others. Join today!
All information provided as a public service without medical or legal responsibility. The opinions expressed in the Nevus Network Newsletter are those of the writers and do not necessarily reflect the views of the Nevus Network or of the medical community at large. You must consult your own personal physician for all medical advice. ©1996 Nevus network Reprinted 2004.