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The Congenital Nevus Support Group©


Our second SkinTwin Nevus Network Weekend was held in mid-July, 2006 and was a very rewarding experience for those who attended. Our SkinTwin Weekends are open to anyone with a giant nevus age 16 and over. If you want to make progress in reaching a point in life where your giant nevus becomes a "non-problem" for you, then consider attending our next one. Learn how to cope better with your giant nevus from the only true experts in the world, other people who have a giant nevus just like you do... Just send us an e-mail at info@nevusnetwork.org and we will keep a list of interested people to contact when we make arrangements for our next SkinTwin Weekend. It is a fantastic experience to be in a room that contains only people with a giant nevus!

Photo "Self-portrait with others" by E

Here are R, age 34, torso nevus, B, age 50, bathing trunk nevus, E, age 29, torso nevus, and M, age 57, torso nevus, all standing on the Canadian side of the Blue Water Bridge, with Port Huron, Michigan in the background. R does not have many satellites and almost none on the face. B has about 1000 satellites. She had about 25 coal-colored facial satellites with about 8 removed surgically. The largest was silver-dollar-sized leaving a 2-inch scar on her right cheek. The rest of the satellites have faded by about 75% to light cocoa over 50 years and are not visible except close-up. E has countless numbers of satellites scattered everywhere. M also had quite a few facial satellites that were either removed or faded over the years.

R commented that the weekend showed her that "happiness is the certainty that we are accepted and loved despite the fact that we are the way we are." She went on to say, "The weekend was very cathartic for me. Although I've known for a while (since I found out about the Nevus Network a couple years ago) that I'm not the only nevus person on the planet, actually seeing other skintwins was overwhelmingly positive for me. I'd never seen anyone with a giant nevus before this weekend. I'm now more open about myself. I came home and, for the first time, shared my 'discoveries' with a few close friends. And without even starting to cry!"

B felt it was fantastic for four adults with a giant nevus to be in the same photo together, after she spent 27 years trying to find even one person with a giant nevus. The weekend helped her see that many of the same issues she struggled with, other skin twins struggled with, too.

E felt that getting together was good in order to actually meet people she's talked to and find out their perspectives on life. "I often feel I get the short end of the stick. I have to prove I'm normal. Even though we have the same skin condition, life for each of us can be very different depending on the type/extent of our giant nevi. I'm not able to 'cover.' I 'show' all the time. We can be at very different places in life. I was very surprised about that. We're not at all at the same place with the same thing. I stumbled on a way to cope with my nevus as a kid: deal with the nevus issues once at school then refuse to tell of the abuse over again at home. Home is SAFE. At school, you get beat up. I didn't say, "Oh, Mom, someone did so and so to me at school today." Why relive it at home? My parents had no idea of the abuse that was going on toward me. Church helped me a lot as a kid. I had 3 good friends there. Now, though, I wonder if my parents could have helped me more if they had known what was going on. My brother got in fights to try to protect me, but neither of us ever told my parents why he got in the fights. We really need an "owner's manual" for nevus coping. Try different things. If one method doesn't work, try another. I stayed in a rut never telling about the problems and BJ stayed in the opposite rut. She told her parents exactly what was going on, and they never did figure out a way to help her.... We both should have switched and tried different things... With a giant nevus, there are individual struggles and individual solutions."

M felt that "It was an eye-opening experience to meet people like me with a lot of the same feelings. It is often like hearing myself talk. I'm not alone anymore, even though I spent more than 55 years alone. I have a group now. I have finally figured out how to tell someone about my "secret" when I can and do "cover" all the time....Say, "I have something I want to tell you. It isn't something bad. It isn't about you. It's about me. I have carried this secret around way too long. My insecurity put me into hiding. I'm sorry that I haven't shared this part of me with you before, but I want to be more open in my life now. I was born with a birthmark called a giant nevus. It is the same as the smaller dark moles you see on most people's skin, only it is a whole lot bigger. It doesn't hurt. It isn't contagious. It's caused from a gene that went wild. It covers me from here to here (and point out where). I am telling you about this because I want to be more comfortable around you. I want to be who I really am. I don't want to carry this secret any more."

M also said, "I find E amazing because she can be so open about her life, since she can't 'cover.' She's more 'beyond nevus' than those of us who can 'cover,' with more acceptance, with a fresher outlook than the rest of us. She doesn't have the 'show/cover' issues the three of us have, because she can't 'cover.' She has more freedom than we three because she does what she wants, how she wants. That is so much healthier." We who can 'cover' have a lot more hang-ups."

Well, we are all trying to get beyond our hang-ups! If you'd like to meet, just send us an e-mail! All the activities of the Nevus Network are planned to get the most bang for the buck, money-wise, so NN meetings will easily fit into everyone's budget.

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