©Nevus Network

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: info@nevusnetwork.org

Se parle francais. Se habla espanol. Sprechen sie deutsch.

 

Newsletter Number 1 Fall, 1990

 

 

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Welcome one and all to N.N.

 

Here we are...finally publishing the first edition of the Nevus Network newsletter! As the co-editor, let me introduce myself: My name is BJ and I was born with a bathing trunk congenital nevus from my shoulder blades to my knees 34 years ago. I underwent 5 major and 25 minor surgical procedures before I reached age 5. I had skin grafts of my upper back, dermabrasion of my thighs, and removal of some satellites, all of which were largely unsuccessful as much of the brown pigmentation seeped back afterward. The rest of the nevus has remained unchanged over the years. I also have 500 or more smaller satellite nevi scattered over my entire skin surface. I spent the first 27 years of my life searching for a "skin twin." I always wondered if there were other brown and white people in the world, or if I were really the only one. I scanned face after face after face over the years searching fruitlessly. I once worked at an amusement park and would rapidly examine each person coming through the turnstile: no, not that one, nor that one either....

I clearly remember the first time I actually saw a picture of another human being with a large congenital nevus. I was 26 years old at the time and studying information in a dermatology atlas in a medical library. I stared at the picture for a long time, mesmerized and fascinated....my gosh, Iím not alone any more in the world. Thereís another one...right there on the page. I knew if I had actually seen a photo of someone in a skin disease book, I could find someone in real life. That night I couldnít bear to part with the picture, the first proof I had ever found that I wasnít the only one with this skin. I finally borrowed the entire book from the library. I ended up scrutinizing that picture at home for 2 whole weeks.

About a year later, in 1983, I met my first "soulmate" in the flesh. Roni was a twenty-two-year-old girl with multiple satellite nevi and a small bathing trunk nevus that had been completely surgically excised with grafts. I vividly recall that moment to this day. Her skin looked a bit like mine: the same satellite moles sprouting hair, much more extensive scarring from skin grafts, similar pigmentation seeping back. I knew at the time I needed help in living with this condition, especially as an adolescent; and I still need help now. I need help from people who have walked in my footsteps, who have actually lived with this. I also knew I could help others by sharing my life experiences, my slow but steady growth in self-love and self-confidence. Because of my need for help and my wish to help others like myself, Iíve been running an informal network of support for this condition ever since I met Roni. In 1988, she developed neurocutaneous melanosis, something Iíd never heard of before, and died of malignant melanoma of the brain earlier this year. Once again, I felt all alone in the world--and more scared of dying, too. I want to meet others with a nevus, especially those older than me. Fortunately, I recently became acquainted with Kelly, who was independently trying to establish a support group, and together weíve decided to formally launch the Nevus Network. I would like to extend our warm welcome to all! -- BJ, San Antonio, TX.

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Nevus Network Goals

 

  1. To provide a network of support for those with large birthmarks called congenital nevi through letters, telephone calls, e-mail, and meetings as lay persons only.
  2. To general a newsletter and information sheet periodically.
  3. To share ONLY information.
  4. To remain neutral regarding any therapy.
  5. To COMPLETELY refrain from giving any medical advice or physician referrals at all.
  6. To remain private and independent of any government or group.
  7. To give support free of charge, relying on donations and volunteers to meet the needs of the group.

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One Motherís Search for Information and Support

 

Editorís Note: Kellyís daughter, Jillian, was born with a giant congenital "blouse" nevus.

 

My daughter Jilly was born on New Yearís Eve of 1987. At least 50% of her body was covered with coal black skin. Neither my obstetrician nor my pediatrician had ever seen anything like it before. At the time, many questions were spinning through my mind. Will I hurt her if I touch her? Will her nevus fade away or does it have to be surgically removed? Can I find a doctor who knows anything about it? What kind of life will she have? Is it fatal? After being fed large amounts of horrifying misinformation, we finally found a dermatologist who had seen this skin condition before and could provide us with a more accurate description of her situation. Because of the rarity of her nevus, many of my questions remained unanswered. We searched for more answers, both from doctors and published material, and still came up with inconsistent, nonspecific, and outdated information.

Because of this lack of information, I felt a need to contact other families who had already dealt with giant nevi. I wanted to talk to other parents who had faced tough medical decisions or who were now facing them. Should we have surgery done or not? Were they happy with their decisions or would they have done things differently? What had the doctors told them? Was it consistent with what I was told? How were their children handling it? How well were they coping? I had and still have so many questions and so few people who could answer them. I knew that there must be other parents out there with the same need for information.

My daughter is now 2 1/2 years old. Her nevus has faded to a light brown. We are still compiling information so we can make all the best decisions for her. So far she has not had any surgery. I realize that every individual case is different and what may be best for one child may not be best for another. I feel that there is no one right way to deal with this condition and that we can all learn from each other. By getting together, we can make a difference in our and our childrenís lives right now. We can also help children and parents in the future who have to deal with the same questions and concerns that we now have.

My main motivation for joining this network is to provide support for my daughterís emotional well-being. Iím sure she will have times when she feels very isolated. After all, it is highly unlikely that she will just bump into someone who has a giant nevus. I think it would help our children tremendously to be able to contact other people like themselves who really know what they are going through. Once we as parents get the support we need, I feel it is important to keep the network alive for our childrenís sake. They may or may not need that support now. But wouldnít it be great if we could give them somewhere to turn when they did? We need your enthusiasm and support! --(Editor's note: In 2004, Jilly is doing well, nearly 17 years old and wears bikinis to the beach with her "as is" nevus!) Kelly H, Stillwater, OK

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Join our group!

To join the Nevus Network, fill out the on-line or printed registration form or e-mail us at info@nevusnetwork.org or mail the registration to the address below. There are no fees to join, but we are always happy to accept donations. We are a completely private charity and your donations are not tax-deductible. Please make checks payable to Nevus Network, PO Box 305 West Salem, OH 44287. Thanks!

 

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. This newsletter may be photocopied without permission for support group/patient information use.

©1990 Nevus Network reprinted 2004