About Our Logo "Dotty"smThe Nevus Network
©
The Congenital Nevus Support Group
2010 - Our 27th Year!
Large Brown Birthmarks, Giant Congenital Pigmented Nevus, Bathing Trunk Nevus, Giant Hairy Naevus
"When things don't happen for the best, we make the best of what happens!"
Welcome to the Nevus Network! Our support group, founded in 1983, provides support and understanding to families whose lives have been touched by a large brown birthmark called a congenital nevus, also spelled nævus in Latin. This condition is known as nævus géant congénital in French and größer kongenitaler naevus, schwimmhosennaevus, or tierfellnävus in German and nevus gigante congenito in Spanish. Feel free to check out our other keywords. We publish an information sheet and a periodic newsletter. Because all current treatments have major complications and members are unfortunately sometimes worse off after treatment than before, a congenital nevus occasionally turns out to be a rare skin condition better left "as is". Contacts with others can be so helpful in coping with this situation. In our group, our melanoma cancer risk is about 2.5% at present for those with a garment nevus and 0% for those with a head/extremity nevus. We attempt to place new contacts in touch with other members who have similar skin conditions. We are also actively recruiting older members to serve as successful role models for the younger members of our group. We offer services free of charge but do depend on donations to keep our shoestring support group running out of our homes. Feel free to browse our web site for further information!
Join the Nevus Network just...
email us now!Bienvenu au Nevus Network. Nous avons beaucoup d'informations pour aider les personnes atteintes d'un naevus geant. Nous parlons francais couramment et serons tres heureux de parler avec vous! Bienvenidos al Nevus Network. Tenemos informacion para ayudar las personas con nevus gigante. Escribenos ahora! Sprechen sie deutsch.
1. To provide a network of support for those with congenital nevi and/or NCM through the Internet, letters, photos, telephone, and personal meetings as laypersons only.
2. To generate a newsletter periodically.
3. To share general medical and psychosocial information.
4. Since all currently used treatments can result in significant complications, to remain neutral regarding any treatment.
5. To provide all information in a general way without legal or medical responsibility.
6. To remain independent and voluntary as a private charity. Your donations are not tax-deductible since we are not an official 501(c)3 organization, as that involves too much bureaucracy for us. But since we get a lot of bang for the buck, even tiny donations such as brownbagging a lunch or two, which anyone can afford, help us a lot.
7. To give support free of charge, relying on gifts to meet expenses. Please be generous!
8. To maintain a confidential mailing list from which statistics will be periodically published.
Cute little Sophie and her arm nevus--a photo story! click here
The cause of congenital nevi may have recently been discovered...Read about the latest fascinating information here: possible cause found
January, 2010: Our funds to run the Nevus Network are still very low. We try to fund the charity with about $2000 per year from our members. Why not send a gift to the Nevus Network? We donate up to 20 hours a week unpaid time to keep the Nevus Network running. That's an unpaid half-time charity job! Of course, we also have a regular, paying job to cover our own personal expenses. But we need financial help from every single member. Unlike nearly all other charity groups, 100% of your donation goes to direct charity, every single penny. We don't have administrators or directors here at the Nevus Network. We don't take compensation of any sort. Ours is a labor of love, not money. We have remained completely independent for 27 years now and we have no conflicts of interest to disclose. Our information is as unbiased as we can present it. Please try to read all of the information with an open mind, allowing yourself time to digest it. Some of the information may be new, unfamiliar or even frightening to you. But if you browse the entire website with an open mind receptive to new ideas, you will learn an incredible amount and be better prepared to make the best decisions possible for yourself or your child. We aren't making money off nevus kids and their repetitive, often times unsatisfactory surgeries, so we are able to be as unbiased as is possible. We aren't making money off the desperation of nevus parents who only want the best for their child. In fact, we understand that desperation because we have a nevus ourselves. Please make a small sacrifice to help us out.....Many members have financial problems nowadays, and we do, too, as our work hours have been reduced. But just about everyone can still skip some fast food meals and brownbag a few lunches and save up $10 to send us!
Donations may be made online by clicking the button above. If you prefer to donate by mail, please send all donations to the Nevus Network, PO Box 305, West Salem, OH 44287 USA. Checks should be made payable to Nevus Network. Stamps (41 cents and 17 cents) are also needed. 100% of your donations are directly used to fund NN expenses, as everyone at the Nevus Network is a volunteer. Our expenses consist of website and internet fees, domain name registration, PC, printer, monitor, envelopes, paper, Xerox fees, photo reprints, telephone, medical journal reprints, and postage. A big thank you to Larry and Gina W, who donated $700 for our first research project, the occurrence of melanoma in our group, published in 2005 (J Am Acad Dermatol 2005;52:793-7). And another to Loretta Gargula, who donated $1,000 for our second research project, the occurrence of neurocutaneous melanosis in our group (J Am Acad Dermatol, 2006;54:767-77). Our annual budget is usually about $1,000, except for special projects like those above, so even tiny donations are apprecated. We try to get the biggest bang for your buck.... THANK YOU SO MUCH!
A big thank-you to Dorothy and Neal Pollon & Family who just donated $1,000 for our third research project, which will involve conditions associated with giant nevus, surgical results of members of our group, stats regarding marriage and children among adult members, etc. This will be very exciting research!
GENERAL INFORMATION ON GIANT CONGENITAL NEVUS
Frequently Asked Questions:
What is a nevus? Why doesn't nevus skin sweat? Why do areas of nevus skin look thinner than normal? Why do moles appear? How common is a nevus? What are melanocytes? What is neurocutaneous melanosis? Is MRI helpful? Will congenital moles change? Why are nevi important? Which moles may develop melanoma? What is the risk of cancer? Does melanoma occur in people without giant nevi? Is melanoma curable? Does surgical removal lower the risk of melanoma in those with a giant nevus? What is the best treatment for congenital moles? What is direct excision? What is serial excision? Do skin grafts help? What are the pros and cons of cultured skin? What is Integra? What is dermabrasion or curretage? How is laser treatment used? Are chemical peels helpful? How do skin expanders work? Are there giant nevi that are too giant to be removed? What is the treatment of a facial nevus? ...of a scalp nevus? ...of genital and rectal nevi? ...of arm and leg nevi? Why is nevus skin so dry and itchy? What are the goals of surgical excision? How will the decline in the quality of medical care affect us? What type of concerns do most parents have? How often should a congenital nevus be examined it is is not excised? What are the benefits of having a giant nevus? What can we do to prevent melanoma?
SELECTED MEDICAL JOURNAL ARTICLES ON CONGENITAL NEVI
NEVUS NETWORK MEMBERS: TREATMENT AND CANCER STATISTICS
Our death rate is now about 2.3% for those with a bathing trunk or torso-type giant nevus! And great news for those members with a scalp, facial, or extremity nevus, the mortality rate so far is still at zero. Unfortunately, our death rate for that small group with only satellites and no giant nevus has risen to 41%. Even so, about three out of five of this group does fine.OUR LAST NEWSLETTER Contents: Nevus Network surpasses 800 members in 2002! An Incredible Gift.... Teen with Giant Nevus Survives School Daze Minimizing the Trauma of Doctor Visits Our New Slogan Just a Regular Guy Editors' Corner Penpal Program Join the Nevus Network
Our volunteers publish newsletters only when we have spare time, which we haven't had in a few years now, but this last newsletter is a good one! It takes about 3-4 months of spare time for each newsletter. We hope to publish another one soon, when we find some free time! Maybe when we are laid off from our real jobs....
Lots of photos of birthmark buddies here. Feel free to look for your skin twin!
All of our newsletters going back to the very first official one in 1990 are found here...while our unofficial ones go back to 1983!
ON LINE REGISTRATION: To register online, please send us an e-mail including a name, address, phone, and name and date of birth of the nevus person, and a small description of the nevus. Please tell us if there are any satellites, what type if any of treatment, marital status, children, and occupation. We will be happy to mail you one of our info packets and include appropriate photos. If you prefer, you may also remain anonymous or give a pseudonym. Thanks!
Register here
E-mail the Nevus Network now and we'll publish selected letters!
Ask a question here
For Further Information
Call or Write:
The 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
e-mail: info@nevusnetwork.org
For information via US Mail please enclose a large self-addressed envelope with 4 stamps with your request for information. We can return long-distance telephone calls in the USA after 9 pm and on weekends. There are no dues or fees to join. Anonymity available if desired.
OTHER RESOURCES:
There are many other resources available nowadays for rare disorders, which is truly amazing to those of us who remember when almost no useful information could be found as recently as 1983 when the Nevus Network was founded. Here are some that you may find helpful: resources
History of the Nevus Network
The Nevus Network was founded in 1983 by 2 women in their 20’s, each with a giant bathing trunk nevus. BJ was 27 years old at the time and had been searching unsuccessfully for another person with a giant nevus for most of those years. She met Roni, age 22, through a dermatologist and the first support group in the world for giant nevi was born. Roni died of neurocutaneous melanosis and malignant melanoma of the brain in 1990 at the age of 28 and BJ was alone in the world once again. She restarted her search and met Kelly, who was also trying to start a support group for nevi. Kelly’s daughter, 18-months-old at the time, has a giant blouse nevus. BJ and Kelly joined forces and the Nevus Network was restarted in 1990. From that humble beginning of 2 people back in 1983, the ©Nevus Network has grown to more than 1,500 members! Fortunately, Roni is one of only 21 deaths in the group so far. Welcome to all!
Disclaimer
The Nevus Network is a lay support group only and does NOT provide medical advice, medical referrals, or physician referrals. No one is to act on the medical information provided by the Nevus Network or any member of the support group but to act ONLY on the advice of their personal physician(s). The medical information provided is of a general nature only and may or may not be applicable to any adult or child’s particular medical situation. Everyone MUST seek specific medical advice from their own personal doctors. The Nevus Network makes no guarantees or claims or expressed or implied warranties or recommendations regarding any of the material published or any of the services provided. Due to rapid changes in today's world, information may become quickly outdated. If you find any errors or inaccurracies, please let us know via email at info@nevusnetwork.org. Please consult your own personal physician and related professionals for any individual advice needed. Thank you!
The Nevus Network
This page last updated on January 2, 2010. Copyright © 2010 Nevus Network. The Nevus Network logo, name, and content of this site is the sole property of the Nevus Network and may be used for nevus support only. Any other use of this material without the express written consent of the Nevus Network is strictly prohibited.