The Congenital Nevus Support Group Newsletter
PO Box 305, West Salem, OH 44287  (419) 853-4525   (405) 377-3403
web site: http://www.nevusnetwork.org
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Newsletter Number 10 Winter, 1998
ISSUE 10 CONTAINS:
A Mother Recovers From Her Depression
Editorsí Note: Sueís 18-year-old daughter, Inga, has a giant torso nevus with many satellites.
I was 23 years old and living with my husband Eric in Frankfurt, Germany in 1979 when Inga was born. Ingaís father was an Army military police officer. We had planned this pregnancy and were both very excited about becoming parents. We had taken parenting classes and a crash course in Lamaze. I had a fast labor and one hour after I arrived at the hospital--boom!--Inga was there. As much as we tried to prepare for parenthood, nothing we had done could have prepared us for the shock of having a new baby girl born with an extensive giant nevus. I remember the nurses bundling her up fast and only letting me hold her for a moment. I remember seeing something dark by her neck area and I thought it was blood. She was whisked away, which at the time struck me as odd. I was taken to recovery and Eric went back to our apartment to call family in the States. About 4 hours after delivery, a new doctor came in to talk with me. He said he wanted to discuss some "problems" with Inga. I still hadnít seen her. The doctor said she had moles--congenital hairy nevi--about one in 200,000 to 500,000 births. I told him I wanted to see her. I looked at her legs which had large satellites and thought, "No big deal--she can wear pants." I started to undress her trunk and when I turned her over and saw her entire back, neck, and upper arms completely black and wrinkled like elephant skin, something inside me flipped. I remember crying and feeling empty inside. In retrospect, I now know at that moment I plummeted into a deep depression that took me years to overcome.
I was breastfeeding Inga and trying to nurture her in every way I could at the time. And yet every waking moment seemed filled with the questions "Why?" "Why her?" "Why me?" There were no answers. Inga was 8 weeks old when Eric completed his tour and we returned to the US. It felt so wonderful to be with family again, and yet I felt so alone. We chased from doctor to doctor for 6 months, finally going to the University of Michigan. Surgery was never recommended at the time because Ingaís nevus was so large. We continue to make annual checkups. I am happy to say Inga is 18 years old now and remains stable. She does wear T-shirt type tops, which reveal her nevus at the neck and upper arms. Inga has weathered 3 biopsies and each one has been negative, thank God above.
As the years passed, I came to feel that Inga had a mission when she came to me as my daughter. She has taught me so much about life. I used to be so caught up in material possessions and outside beauty. Now I know the essence of a person is what is beautiful--the spirit and life from within--not the exterior. I would not trade Inga for any other daughter in the world. She has a strength and joy that resounds so deep within her soul and I am happy and proud to be her mother. To what do I owe my transformation? How did I overcome my depression? Through time and by faith and hope, I believe. Initially I wanted my little girl to be like every other little girl, blemish-free with pure white skin. I now know that the lessons and the pain that we have borne as a result of the nevus have actually been a blessing for me and for my family. Thatís not to say that I wouldnít take the nevus away if I could, because youíre darn tootiní right I would!
Inga did well in elementary school. I thought dealing with her nevus was a breeze then. In middle school, things changed quickly for the worse. Her peers were ruthless, constantly tormenting her, and her grades suffered. Now that she is in high school, her social situation is better. But when homecoming came up her freshman year and she so desperately wanted to go and no date was forthcoming, once again her pain became my pain. My heart weighed heavy as I felt her desperate need just once to be like all the other kids. That feeling surfaces and resurfaces. And in her sophomore year, Inga did find a boyfriend!
When Inga was 14, we finally met others with a giant nevus for the first time through the Nevus Network. Prior to that, I had been fairly ignorant regarding the medical repercussions of this condition, such as brain melanoma and neurocutaneous melanosis. Ignorance is bliss, as they say. Now that I know more of the facts, it has been sobering. As Ingaís nevus is too large, we were never offered any surgical treatment. I have to believe that we have done the best we could in not having any surgery. If someday Inga chooses a procedure, then it will be by her choice. Now it is no longer in my hands. But then, it never really was....--Sue E., Brighton, MI.
Molly Sends a Rainbow!
Editorsí Note: Doug and Kellyís daughter Molly, our "poster child" who had a bathing trunk nevus, died of neurocutaneous melanosis last summer. Kelly and Doug are always happy to talk to others about their daughter. They also have a younger son named Ryan
For three years, Molly Kate P. was a beautiful, smart, and sweet little girl. She was everything I could have asked for in a daughter. We had fun together. Molly was very much loved and accepted by all. Doug and I thought we were dealing well with her giant nevus condition. Molly had seven skin excision surgeries under her belt and she looked wonderful. After the seventh surgery, we figured that we had done all we could and would put her through no further discomfort. We figured Molly was finished with hospitals, gauze, stitches, and doctors when she was diagnosed with hydrocephalus caused by neurocutaneous melanosis (NCM or nevus cells on the brain and spinal cord). Needless to say, we were petrified, more by what we didnít know than by what we did know. Even though we were told that NCM is usually fatal, we still had hope.
Month by month, our hope diminished as subtle changes in memory and behavior occurred. Molly became forgetful. In May, 1996, she had an MRI and it confirmed that the tumor was growing. Molly was placed on pain medications for back pain caused by tumors in her spine, which made her very sleepy. On June 12, 1996, Molly had a severe seizure/stroke. The doctors were never sure which it was. She was unresponsive from then on, and we found ourselves deciding whether or not to place a feeding tube in her stomach. We did and she was discharged home with it. Hospice helped a great deal in her care. We prayed that God would call her home soon.
Seeing our lovely daughter in a constant semi-coma was nearly unbearable. The one comfort to us was that she appeared to be in no pain. We knew we would rather let her die than exist in that condition. We sometimes wished we hadnít put her through all the surgeries. We gave her permission to go whenever she felt the time was right. We held her and talked to her about Heaven and how much fun she would have there. She would once again be able to do all the things she loved to do before. On August 3, 1996, with Doug and me by her side, she went to be with her heavenly Father. We were cheering her on the whole time, telling her to fly up to Heaven. Since then, God has given us many signs to let us know that He has my girl with Him. I jokingly say God gave us a wonderful girl for a short time and then she was so good He decided to keep her for Himself!
The day of Mollyís funeral was very hot--over 90 degrees. By evening it started pouring rain. After the heavy rains subsided a tiny circle of clear sky formed, sunlight streamed down, and a beautiful rainbow appeared. Doug said he knew it was a sign from Molly. I mentioned Mollyís rainbow to my pastor and he handed me a picture he had taken of it from his van! Itís a perfect picture. The next day, by chance we turned on the radio and what should we hear but "Good Golly, Miss Molly" playing loud and clear. I know that Mollyís spirit lives on and that we will see her again. Someone told me recently that love transcends all time and space. And so many things have happened since Molly died that some may call coincidences. I donít believe in coincidences anymore. I believe, as I once heard, that a coincidence is just Godís way of remaining anonymous. God has wrapped us with His comfort blanket, but we still miss Molly. All we want is for her to be happy, and if it canít be here on earth, I know itís in Heaven! --Kelly P., Lansing, MI
Coping Improves When "Why Me?" Becomes "Why NOT Me?"
Editorsí note: BJ, age 41, has a bathing trunk nevus from her shoulder blades to her knees.
Perhaps, as Kelly writes, coincidences are just Godís way of remaining anonymous. And perhaps randomness is a part of our world. And perhaps both are true. For 26 years of my life, like all of you, I asked myself the question, "Why me?" Why was I born with a bathing trunk nevus and not either of my two brothers? Why was I spotted and speckled with more than 500 satellites and they both had flawless milky white skin? Why did that long, coarse hair sprout from those slightly protuberant moles? As a little girl, I thought that sprouting hair and the protuberance looked especially repulsive, and it took me years to accept it. I never heard of anyone else who looked like me. Why was I all alone in the world with this condition? I knew in my heart neither I nor my ancestors, in spite of what some people would tell me, had ever done anything to deserve this. "OH GOD, WHY ME?"
No one had an answer. My mother tried. "Everyone has something wrong with them," she said. "What does my older brother Steve have?" I asked. "He wheezes," she replied. And what does my younger brother Bart have?" I asked again. She hesitated and I could tell I had her stumped. Not everyone has something physically wrong with them at birth. Years later, I realized my mom was half right. Later, if not sooner, everyone does have something wrong with them because everyone gets sick and dies and no one lives forever. Some time after, my younger brother developed mild amblyopia, and my mother finally answered my question, "He has a lazy eye." As a little girl, I was fascinated by what other people had wrong with them. But even I could see that most people, including my brothers, had minor problems compared to me. Obviously, life was not fair.
When one of my classmates, Kim S., jerked up my skirt in kindergarten in front of all the other kids to stare at my thrice-dermabraded, scar-and-nevus-covered thighs, I started to cry and asked myself, "Why me?" (It is completely impossible to hide extensive scarring or a giant nevus from classmates over time. Looking back, my mother could have initiated an educational Show-n-Tell about my skin with the teacher and the class to avoid this situation.) When another, Debbie H., pushed open the locker room shower door on purpose and ambushed me naked in the shower after ninth grade gym class with only a towel to hide behind, I again cried to myself in the middle of the night, "Why me?" (My doctor could have given me a medical excuse for gym to avoid this situation. Both my parents fortunately did emphasize getting exercise and maintaining physical fitness outside of gym class. Because I was strong, I was not picked on very much.) When I was necking with a boy in college who didnít know about my skin and he happened to glimpse a bit and threw me out of his room, I screamed and cried for several days, "Great Spirit, why did you do this to me?" (I later learned through experience to tactfully tell the opposite sex about my skin in a casual situation such as dinner relatively early in a relationship. Then I could decide later on if the relationship had any potential and whether or not to show any of my skin to them. This way I would avoid the emotional trauma of that initial shocked rejection--for them and for me.) In all of these situations, there was that unspoken question, "Why me?" Why do I have to deal with all this? Itís a legitimate question, and no one had an answer that made any sense to me.
In the summer of 1982, I was 26 years old, renting 2 rooms on a familyís third floor, working, and going to school. I came home one day for lunch. Just by coincidence, I turned on the TV. Now I almost never watch television. When I was little, our TV broke, and my parents didnít get it fixed for years in spite of their childrenís pestering. So I never developed the habit of relaxing with television. Looking back, I am so glad I grew up TV-free because I was not constantly bombarded by the mediaís images of made-up, airbrushed, computer-enhanced beauty, which no one, including the models, can ever really achieve. (Have you ever seen a candid photo of supermodel Claudia Schiffer--she looks quite ordinary!) But that day by chance, I turned on my small black and white television. And I was entranced. A rabbi Harold S. Kushner was visiting Cleveland where I was living and talking about his life. He said, "I watched my 14-year-old son suffer and die an old man of progeria, or premature aging, and I kept asking myself, ĎWhy me?í Iíve pondered that question, and I no longer think that is the correct question to ask. Instead I think the right question to ask is ĎWHY NOT ME?í" This could have happened to anyone. Why not me? Sometimes things happen by chance. God cannot control things that must follow natural laws. It could have been you. But it was me. Why not me? Randomness is a part of the world. Why not me? Now that this has happened to me, what can I do about it? How can I best cope with it? To me, it was the first time anyone trying to answer that question made any sense.
Dr. Kushner was discussing his new book, "When Bad Things Happen to Good People." BAD things can happen to GOOD people. It was a novel concept, something I had always felt even as a little girl but had never been able to articulate. Lunch forgotten, I couldnít take my eyes off the television. When it was over, I quickly jumped on my bike (I wasnít able to afford a car then) and raced 3 miles to the nearest book store. By chance, they had just received a shipment of Kushnerís books that very day. I bought one and biked back home to read it. Fortunately, I had that particular afternoon free to read. By twilight, I had finished the book and Dr. Kushner had changed my life forever. After 26 years, I stopped asking myself, "Why me?" My nevus could have happened to anyone. Why not me? And now that I have it, I need to find help in dealing with it.
When I saw someone else with a serious problem before I read Kushner, I used to think, "That poor thing, I hope that wonít happen to me because I Ďve already had my quota of bad luck." But now I tell myself, "I feel really sorry for that person and I am so glad that it hasnít happened to me. I will do what I can to prevent it from happening to me, but it could happen to me and if it did, I would deal with it at the time." After all, why NOT me?--BJ, Lake Ridge, VA
Nevus Network Keeps Growing!
The Nevus Network now has a total of 336 members. We have 120 males and 216 females. 37 members are age 18 or older. 9 are age 40 or older. We have 318 members of caucasian origin, 10 of hispanic, 6 of asian, and 2 of african. 190 members have a giant nevus and 146 have smaller nevi, mainly of the head and neck. 19 additional members have been lost to contact. Most of our members enjoy good health. We do have 2 members with hydrocephalus with or without seizures. 1 member has seizures. 7 have neurocutaneous melanosis (NCM), seizures, and hydrocephalus, of which 5 are alive. 2 have NCM and hydrocephalus without a giant nevus. 6 have melanoma, of which 4 are alive. At least 2 members have abnormal MRIís. 2 have Dandy-Walker malformation. 1 has heart defects. Several have learning disabilities. We have had 4 deaths, 2 of brain melanoma, and 2 of NCM without melanoma. No autopsies were done on the 4 members who died to verify the accuracy of the diagnoses. So far, the great majority of our members are alive and doing well. Please keep us informed of your current address and of your or your childís health status so that our statistics can be as accurate as possible.
Editorsí Note: Jillian, age 9, has a giant blouse nevus. She won a poetry contest at school for her poem entitled "Me." The poem was also published in the Anthology of Poetry by Young Americans and in Sparrowgrass Poetry Forum. It is reprinted below.
Me-----A Special Poem
I was born different, you see,
I have a rare skin condition,
and everyone stares at me.
I used to get sad, and sometimes mad,
but now I know itís their curiosity.
Iím one of the lucky ones,
because I have true friends,
they always stand by me-through thick and thin.
I go with my lifeís mission
the best that I can,
so I can go back to where I began!
Adult Overcomes Her Shame
Editorsí Note: Gloria and her grand-niece both have a giant back nevus. They are our only family so far to have a second family member with a large nevus. Interestingly, the Naevus Support Group in England had 5 pairs of siblings, each with a giant nevus.
My name is Gloria P. After reading all the newsletters that I acquired after meeting BJ in Virginia, I would like to share my story. I was born with a large back nevus in August, 1947 in Clements, Maryland and I am 50 years old. I am the youngest of six children, all born at home with the assistance of a doctor. My siblings have no nevi. I never had any surgery to remove my nevus. Things seemed OK until I turned six years old and started to question the "spot" on my back. My mother had a large round mirror in her bedroom, and one day while undressing, I saw the "spot." I asked my mother what it was and why it was on my back. She answered, "It is a birthmark and you were born with it." End of conversation. That night I dreamed that the birthmark went away and as soon as I woke up, I ran to the mirror, only to discover it was still there....My mother sewed all my clothes so my nevus was never exposed. Although I grew up around lots of water, I never went swimming so I never wore a swimsuit. In gym class in high school, I always pretended to take showers, as we had a very "not-in-touch" teacher. When prom time came, my mother sewed a back into a beautiful yellow dress with lace and satin to cover my nevus. I hid my nevus completely while growing up. However, when I became engaged at the "ripe old age" of 17, I knew I had to tell my future husband, so I exposed my back to him and told him I had a nevus. He did not seem to mind and we were married for sixteen years and had 2 beautiful daughters free of nevi. When the father of my children and I divorced, I did not want to get back in the dating scene as I was 34 years old, had very low self-esteem, and a large nevus. However, I met a wonderful man who knew about the nevus a month after we met, and he never mentioned it after I first showed it to him. We did marry after dating for five years, but have since divorced. I will give both my husbands lots of credit for being strong enough to accept and love me for who I was with a nevus! I personally do not think my nevus had any bearing on either divorce. However, my low self-esteem and the fact that I lost my father when I was only 1 1/2 years old caused me to have much emotional trauma concerning the nevus.
Today I live a very productive life with my nevus. I recently had 5 biopsies done and I got a clean bill of health! I have 4 beautiful grandchildren. I thank God every day for the blessings He has bestowed on my family. I do have a grand-niece who was born with a giant back nevus similar to mine. She is in the process of having hers removed. I feel new parents should have their childís nevus removed if reasonably possible. They should highly praise their child and should tell them often how wonderful and dear they really are. I think the Nevus Network is terrific and want to thank BJ and Kelly for all their hard work, effort and courage.--Gloria P., Leeís Summit, MO.
It is with very deep sympathy that we must inform you of the death of David S., age 7, on February 23, 1997, of neurocutaneous melanosis. David also had a bathing trunk nevus. David was the only son of Brian and Carolyn S. of Waterbury, CT. David had been very sick several years ago, but rallied, returned to school, and had been doing much better. Over the Christmas holiday, 1996, Davidís parents noticed that his abdomen was enlarging. The doctors found out that NCM cells had traveled through Davidís shunt, seeded his abdomen, and were spreading. No treatment exists. Brian and Carolyn want to talk to anyone who has faced or are facing the loss of a child. Kelly and Doug P. visited Brian and Carolyn to offer comfort. Davidís death is our fourth death in the support group out of 336 members. Our deepest sympathy goes to the entire family.
Child Feels "Trapped" by Her Nevus
Editorsí Note: Lianne, who has a giant nevus of her thighs, is our youngest contributor so far.
Iím just 8 years old, and I thought I was the only person in the whole world who had nevus. I have nevus on my legs. When some of my friends ask me about it, I say the same thing, itís just a birthmark. I feel like Iím an idiot sometimes! And I feel ugly!!! Itís like a trap to me. My mom does not think so. Did you ever think of this stuff when you were little?--Lianne R., Ames, IA.
Research Efforts by Members Lagging
There are still many members who have not mailed back their registration form for entry into our database. To qualify for entry into the Registry, the nevus must be at least 20 cm in diameter. And of our several hundred members who have had nevus tissue excised since 1993, not one family bothered to send tissue samples for research into congenital nevi! We really canít complain that doctors know very little about nevi when we havenít done our part to help.
The Nevus Network is also sponsoring its own research! We will be publishing more information about the health status of our members in the future. We are also interested in finding out more about the social and emotional aspects of living with a giant nevus, parenting a child with a nevus or neurocutaneous melanosis, undergoing repeated surgical treatments, etc. If you would like to contribute, e-mail us at email@example.com or contact us at PO Box 305, West Salem, OH 44287. Anonymity offered.
Nevus Network Now on the World Wide Web!
The Nevus Network keeps getting bigger and better! We now have a web site on the Internet, thanks to efforts by several of our members, especially Kevin W., Jeff and Beth C. and Joe F. Feel free to visit the site. Our address is www.nevusnetwork.org. We are also looking for before/after, young/old photographs to be used for educational purposes by our group and on our web page. We ask that you label the photo with a nickname or "handle" rather than a given name.
Our anti "werewolf" campaign was a great success, thanks to our many members who wrote the AP and Dr. Adrian Lo of St. Christopherís Hospital. Chris McDougall, the AP reporter who wrote the original article, sent a letter of apology to all of us, stating that he would be sure to verify any medical sources of information with another independent source in the future. The AP published another, medically accurate article on our group written by reporter Nick Jesdanum, which many of you may have read. We received about 30 new members as a result. Many were so glad to find they werenít alone in the world. Nathan and Dianna B. of Palm Bay, Florida were so angry with their hometown newspaper for publishing the "werewolf" article that they convinced the newspaper to publish another medically accurate article about their daughter Amanda, who had a large nevus covering her left face and scalp. We continue to be deeply disappointed, however, by the negative response from Dr. Lo and from St. Christopherís Hospital. Neither one has issued an apology for incorrectly applying the term "human werewolf syndrome" to those with a large congenital nevus. In fact, the hospital threatened the Nevus Network with a lawsuit!
Thanks to Michelle S., Pioneer Hi-Bred International, Inc. donated $250 to our group. And thanks to Christine G., Time Warner Cable donated $200. Culture Technology, Inc. also donated $100 to our group. Culture Technology, Inc.ís cultured composite skin grafts are offered for treatment of nevus patients. Interested physicians and patients may request additional information at (800) 284-1454. Those three donations will help cover the costs of mailing out newsletter #10. Jamie H. of Pensacola, FL, whose daughter Gretchen has a scalp nevus and seizures, collected $50 entirely in nickels and dimes for the Nevus Network by canvassing the beaches near her home! Jamie also had an article about us published in her local childrenís newspaper. We definitely need more donations, especially because photo reprints, Xeroxing, and postage are so expensive. If you found our information and photos helpful to you or your family during an especially stressful time, PLEASE help someone else by sending in a donation. A $10 donation will pay for two new member information packets. A $50 donation will help maintain our web site. A big thank-you to the E, B, and F families for helping to fold, stuff, and stamp our previous newsletters for mailing. Our complete mailing list of members, physicians, and organizations is over 600 now, so we need all the help we can get!
Carolyn Jenkins of Studio920 designed and donated the graphics for our new logo! Our Dalmatian puppy, named "Dotty," is portrayed running briskly. The puppy is courageous and determined in coping with a nevus, yet deeply loved, wearing a heart collar. We think the logo turned out wonderful! We have also revamped our medical information sheet--now doubled in size--with the help of several dermatologists. BJ assembled a medical reference sheet. We have also revamped our poster. A thank-you to Helga M., who suggested the idea of having business cards to give to strangers who stare on the days when one is too fatigued to give a verbal explanation of the nevus. Anyone who would like more cards should send us a SASE with extra postage. Penpals should be enclosed with this newsletter. If you would like penpals and havenít received any, please sign and return the permission slip. Anyone whose current mailing address or e-mail address is not listed correctly should notify us. We have 19 members who have moved and left no forwarding address. If you know of anyoneís new address, send it to us. We sure have come a long way since we started with 2 people way back in 1983 and then again restarted with 2 people in 1990.
And wonder of wonders, we have helped four other support groups spin off from ours: the first one is the Nevus Netwerk Nederland, the Dutch nevus support group whose contact information is listed on our home page. (We love their name!) After asking people for years, we finally convinced someone to start an Epidermal Nevus Support Group! Contact 9 Southwick St., Middleboro, MA 02346, telephone 508-946-1147. Another spin-off is the Blue Rubber Bleb Nevus Support Group at 4975 Preston Park Blvd., Ste 420, Plano, TX 75093, telephone 972-985-6200, e-mail www.swmed.edu/home_pages/brbns/. Our last spin-off is Nevus Outreach, Inc. This is an officially nonprofit nevus support group, founded last summer by several Nevus Network members, dedicated to furthering medical research and collecting physician data regarding treatment of congenital nevi. They are also planning a national conference at Disney World in Summer, 1998. NOI is not affiliated with the Nevus Network but has many of the same members. Visit their web site at www.nevus.org or e-mail them at firstname.lastname@example.org.
Another new nevus support group is the French support group, Association du Naevus Geant Congenital, whose contact info is also on our home page. Nevus groups are finally mushrooming around the world! Unfortunately, we did receive word that the Naevus Support Group in England has disbanded. We hope it is only temporary. Anyone from that group is welcome to join ours.
Anyone with financial difficulties who is contemplating surgical treatment of a nevus is encouraged to contact Fresh Start Surgical Gifts, 1010 First Street, Suite 108, Encinitas, CA 92024 with a telephone number of 619-944-7774. They have openings available for Americans and a waiting list for non-Americans. Those with a facial nevus may also want to contact AboutFace USA, a support group for those with facial differences, at PO Box 93, Limekiln,PA 19535, telephone 800-225-FACE or email AbtFace@aol.com.
So whatís ahead for our group? We always have plenty of projects, especially more publicity and more donations. We need contributions to our research on the psychological aspects of nevi. We also need more stories for our newsletters and more photos. We finally have one sample photo of an extremity nevus, thanks to Sam Desmond. If you would like to help in any way, E-mail us at email@example.com or drop us a line! Weíre always looking for volunteers and donations.--The Editors, BJ and Kelly.
Triumph: Umph added to try!
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