©Nevus Network News

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 email: info@nevusnetwork.org

 

Number 8 Se parle francais. Se habla espanol. Sprechen sie deutsch. Winter, 1995

I'm Just a Regular Kid!  

Editors' Corner

Overcoming Differences Between People

 

Iím Just a Regular Kid!

 Editors' Note: Christopher, age 9 has a bathing trunk nevus.

  I am a nine year old boy with a bathing trunk nevus. I do not have a problem with it. It is other people who have a problem dealing with it. Sometimes people make fun of me, like calling me names such as Wolfman or Hairy Legs. I never had these problems until I started school. All of the kids in my neighborhood knew about my legs looking different, but it didnít matter to them. My bathing trunk area is dark and covered with moles. My legs are hairy down to my knees and I have dark skin part way up my back. One of the ways I deal with this is to wear long shorts. When I go swimming, I keep my shirt on. My swimming instructor said that I have to work a lot harder to swim because of the weight of my wet shirt, so that when I take it off to swim I will go much faster. In the summer my Mom can put a cream on my legs to take the hair off. My legs are still darker, but it is less noticeable. My doctor, Dr. Cohen at Johns Hopkins, suggested the cream. He also said he is trying to get Johns Hopkins to purchase a new laser. This laser may be able to remove the pigment from the moles. I had surgery eight times before I was 4 years old to remove some of the largest moles. I donít remember it, but I can see the scars.

I think I am just a regular kid. I think everyone is different in their own way. This is what I have thatís different. I am in the third grade. I go to karate classes and Boy Scouts. I belong to the Youth Choir at my church and I am an altar boy. I love math and science. Last week I entered a project in the Science Expo at UPJ. I was accepted to the ATOMS Scholars program at the high school last summer. For 2 weeks I got to go and do all kinds of fun math and science activities. My teacher wrote me a note this year that said if all of the world were as sensitive and caring as I am, what a wonderful world it would be. I donít want you to think I am bragging. I took this as a great compliment. My Mom says maybe having this on my legs is what made me so aware of other peopleís feelings. I try never to say anything mean or hurtful to other people. If you have a nevus, I hope you can do what I do most of the time: Forget about it! (Editor's Note 2004: Chris is now a Freshman in college!)

--Christopher B., Hollidaysburg, PA

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Editorsí Corner: Weíre Grateful!

  We wish to thank the Mt. Olivet Foundation, Arlington, VA, which awarded the Nevus Network a $500 Grant. We also wish to thank NationsBank of Virginia, which donated a courtesy bank account to us. Many thanks!! We regret that we cannot return long-distance telephone calls. If you cannot reach us, please try again. A big thank-you to those making the following donations: Dorothy P., Alfred K., Jan K in memory of Vera W., John and Lorie B., Kathy G., Jean B., Quad/Graphics, & many others. Itís so easy to join our group: just place yourself on our mailing list! There are no dues or fees to join, although donations are gratefully accepted. If you would like penpals, please sign permission. The Editors - BJ & Kelly

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Overcoming Differences Between People

  Hi! My name is Marie and I am 13. I was born with a giant T-shirt style hairy nevus that covered all of my front, back, neck, and wrapped around my left shoulder. As I am starting high school next year, I guess that I'm nervous but not a lot because my older brother is graduating from there, leaving behind friends that I know.

I had my first birthday party in the hospital at the U of VA in Charlottesville because they operated on my birthday. About the age of 3 or 4, I had a skin expander put in for a school year and had 3 major surgeries. I also remember driving for 2 hours each week to get the skin expander pumped up. My doctor, Dr. Edgerton, became a good friend of our family.

By the age of 8, I had developed malignant melanoma under my collar bone on the left upper front. Luckily they found it in time so they could remove it without radiation or chemotherapy. Three years after that, my left neck muscle swelled up. They went in for fear it was cancer only to find that it was 3 lymph nodes the size of walnuts that weren't cancerous. Through all of that, I have been teased and laughed at. I've been known as a freak, and the highlight of almost everyone's jokes. With help from my older brother, parents, friends who are popular guys and girls, and the only other friend I had with a nevus until now, I have overcome the boundaries that society has set up for people who are different. I have done this in many ways. At school I have been on the swim team wearing a racing suit which exposes the scars and nevus on my back, arms, chest and legs. I have taken violin for 5 years, been on the honor roll for 2 years, and maintained perfect attendance for 1 year, a real achievement because I am out sick or with surgery a lot. I have performed in and been backstage in plays/musicals, run on the track team, sung and performed in all-county choirs and orchestra, and was chosen patrol of the year. Iím not afraid to admit to my condition and have enjoyed taking Cotillion, ballet, tap, and jazz lessons in dance costumes and tutus. Anytime someone has a rude comment, I do not hold a grudge but am able to face the fact that not everyone will accept me because of this. Instead I just move on in life.

As I look back on what I see as my childhood (ages 1-12), I lost a lot of it because I had surgeries once or twice a year and would get so scared before them I would make myself sick. So to lessen my worrying, my parents would not tell me when they were planned until about a week ahead. But now I somewhat look forward to them, not because I get a month out of school, but because its one step further for me to look as normal as I can. Also I think it has made me grow up faster than a lot of my peers. Another thing, when a kid looks at me for a while, then asks what happened to me, I can explain without hesitation so they understand its OK to be this way. Next time they see someone different or someone making fun of someone different, they can explain that its OK to be different. Thus, the kids younger than us can break the strands of thought about someone different. So instead of disliking them, they will like them and maybe this world will slowly become a better place for all who are different. --Marie E., Arlington, VA

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The opinions expressed in the ©Nevus Network News are those of the writers and do not necessarily reflect the views of the ©Nevus Network or of the medical community at large. For all medical advice, please consult your own personal physician. This newsletter may be photocopied without permission for patient/support group use only.

©1996 Nevus Network. Reprinted 2004.

 

 

The Nevus Network, PO Box 305 West Salem, OH 44287 419-853-4525 405-377-3403

web site: www.nevusnetwork.org e-mail: info@nevusnetwork.org