Readers Speak Out on the Nevus Network  

Support Groups Appearing Around the Globe

In Memoriam…

Over the last three years, we've received a lot of positive feedback about the Nevus Network. It certainly helps keep us motivated to continue persevering with the support group! Here's a sampling:

"Thank you so much for starting the Nevus Network. For years I thought my daughter, who has a bathing trunk nevus, was the only one with this problem. She's now a bright, happy, sociable teenager. She refuses to have anything else done to her surgically, so I guess we're now just hoping for a miracle. I am looking forward to contacting other families and finding out their experiences in dealing with this problem.'' -- H.C.

"When I received your newsletter. I was excited and relieved to finally hear about someone else whose child has congenital nevi. My son was born with a giant nevus and at least 100 satellite nevi in various sizes. He's had several surgeries already. Needless to say the past year has been a hard one....I would be glad to help out with the support group in any way. I have not met anyone else in my state who has a child with this. Thank you so much.'' --N.B.

"We have already contacted the other couple whose name you gave us. It is a relief to know we are not going this alone. The other couple was very nice and we plan to keep in touch through our children's ordeals.'' --K.V.

"The latest edition of the newsletter was very timely for us....We know that we have many difficult times to go through as our daughter matures and grows and as she approaches full consciousness of her difference from the other kids. I guess that is why I felt compelled at this time to re-establish contact with the network....The ideas in the newsletter will be a great help over the years.'' --K.H.

"It is so odd how I feel just knowing someone else who is around my age who has grown up with this birthmark. I have never in all of my forty-three years come across even one person"–C.C.

"Thank you for the newsletters, pictures, and support over the phone. We are so grateful that a Nevus Network exists.'' --R.C.

"It was great reading the newsletter. I love talking to others experiencing this and wish we could all get together. Are there any plans? Can I get penpals?'' --C.M.

"I would greatly appreciate your putting us on the mailing list. We see patients with congenital nevi in our clinic. Many have psychosocial problems and nearly universally express the need to make contact with others with this condition. We give them a Xerox of your newsletter. " --Dr. D. G.

"My son was born with congenital nevi over 75% of his body (he's COVERED) and ever since I've been searching for other people like him. I really believe WE should get out there and let others know about us, so when somebody has a child like this, they are not alone as I have been .'' --R.D.

"The procedure will involve three surgeries and take 6-8 months. It is nerve wracking to us. How do you get through this with a 3 year old? How do you control his fear of doctors and nurses? It would be very helpful if my husband and I could talk to other parents who have been through similar experiences.'' --O.N.

"I wish (VERY MUCH!) to contact other people/families concerned with giant congenital nevi. Also feel free to give my name/number/address to anyone who may want it. I received your newsletter from my son’s physician. Please send me any more since printed. Thank you very much for forming this support group. I am very anxious to get involved." --C.K.

Feel free to contact the Nevus Network any time! We like getting feedback. Please give a copy of this newsletter to doctors/groups in your area for distribution to other patients. We need every one’s help to make our small group a success! The Editors - Kelly & BJ

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Many of you may or may not know that BJ & Kelly, founding members of the Nevus Network here in the United States in 1990, met through the efforts of the Naevus Support Group based in England. Both BJ and Kelly had been involved individually with smaller nevus support groups in the 1980’s, going back to 1983. The Nevus Network and Naevus Support Group have continued to keep in touch (until the NSG was disbanded in 1997). Support groups have also been formed in several other countries in Europe. Ask us for current addresses!

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"Once you accept your own death, all of a sudden you are free to live..." - Saul Alinsky

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