©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
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Newsletter Number 11 Fall, 1998
ISSUE 11 CONTAINS:
A Pre-Teen Receives a Promise
Editors’ Note: Gigi, age 36, has a smallish bathing trunk nevus and 3 healthy children. Gigi has written a very frank testimony of her life. Please exercise caution when sharing this article with children or those with depression.
In 1962, with the rush and roar of NASA and Cape Canaveral just a few miles away, I was born. I was my parents’ fourth child. There was no reason to believe my birth would have been any more eventful than my siblings. My father dropped my mother off at the hospital and returned home with my two brothers and sister. In the room next to my mother, a fifteen-year-old girl was giving birth at the same time. Mother was heavily medicated for the birth, as was the practice then.
When Mother woke up, she was given a beautiful baby girl with black hair and hazel eyes. She quickly checked to make sure I had all ten fingers and toes, as was her custom. Then the doctor interrupted her and unwrapped me. The nurses stood by quietly as the doctor explained that much of my torso was covered in a downy nevus, a hairy darkly-pigmented mole. My mother listened and examined me. My nevus goes from halfway up my back to the top of my thighs and wraps around to the front on the right side. She quietly wrapped me up and told the doctor, "She’s my baby and I love her." Despite my mother’s statement, the nurses were ordered to watch my mother and see how the relationship developed between us.
Back home, the news spread quickly about the birth defect. My paternal grandfather, with his usual lack of tact, sympathy, and wisdom, sent my mother two books about circus freaks. Mother quickly began hiding the defect and worked to silence any information about my condition. She found herself pondering the possibility that the young girl who had given birth at the same time had actually borne me and that her healthy baby had been given to the young girl. She felt very guilty for those thoughts. A biopsy was taken, which was benign. Smaller moles called satellite nevi now began to "pop out" all over my body covering my arms and legs by the hundreds. The doctors had little information on this condition. It was a guessing game. But what they did "KNOW" was that a nevus of this type and degree could and usually did turn rapidly to cancer. I would die. Any major hormonal changes could trigger the cancer. If I survived childhood, I would die during the hormonal changes of puberty. If I survived puberty, I would never survive a pregnancy. No one ever even talked about surviving a pregnancy. That was simply an impossibility. I was told that there would be no children, that I had no future. There were only statements of "If she survives this, then she dies of that." (Editors’ note: Of 495 Nevus Network members, we have had 9 deaths so far, giving us a survival rate of 98.2 %.)
In desperation, my mother took me from doctor to doctor. They all had different opinions, and they were all bad. Finally she found an Orlando plastic surgeon who was willing to try an experimental technique. He would make deep triangular extractions of the nevus skin and then stretch the surrounding skin to cover the extraction area. He felt that when the nevus became cancerous, there would be a smaller area to treat. Of course, the nevus could never be completely removed. It was not a cure, just an act of desperation. The surgeries were long and painful. Complete recovery was impossible. Returning to school after my prolonged absences was difficult. I was to tell no one the truth of what was going on. I was in great physical pain and was unable to interact with the other children on a normal level. Being bright was helpful because I was always a little ahead in my lessons. We now know that children who undergo major surgeries and hospitalizations can suffer a type of "shell shock" or post-traumatic stress disorder and depression. These psychological symptoms were not commonly dealt with in children at that time and even today are often neglected. At the beginning of each hospitalization, I prayed with all my heart that God would allow me to die during surgery. But after each surgery, I would wake up very much alive and in great pain.
By the time my sixth surgery arrived, I was deeply depressed. Now eleven years old, I faced a certain early death. While other girls my age were eagerly facing puberty, my family looked at the development of my body with horror. I simply could face no more…..no more surgeries, no more pain, no more humiliation, no more fear. So I decided to commit suicide. I went to my brother and asked for details on methods of suicide. He was young and did not suspect anything. After listening to him, I decided to wait until after school one day before my sixth surgery, tie a concrete block around my neck, and throw myself into the deep canal near the school. Physically weak and not a good swimmer, I was sure it would work. I had packed my rope, practiced lifting a concrete block at home, and planned to steal one from the vacant house near the school. I waited patiently for the end of the school day.
Two hours before the end of school, I heard something. People talk about guardian angels. I’m not sure who it was I heard. An angel? God? My own sub-conscious? But I heard four simple words, extremely loud and clear, "THERE WILL BE CHILDREN." When I heard those words, I knew without a doubt that they were true. I was going to have children. If I was going to have children, that meant I would survive puberty. And it said "children." That was plural, so there would be more than one child. It must mean I would survive pregnancy. My spirits were instantly lifted! I went home and told my brother that I was going to have children. My brother said, "Yes, you could adopt." I told my sister that I was going to have children, and she agreed, "Yes, you could always adopt." But what my siblings said didn’t sound quite right to me. I knew there was more to my having children than that.
I endured another surgery. My brother went to my mother and told her of my suicide questions. It was decided to stop the surgeries. I felt like I could finally start healing. After all, I had a future to plan now. My plastic surgeon committed suicide himself not long after my seventh surgery. He burned many of his patients’ records and mine were among them. I was left with very little medical information, only the terrible, huge, painful scars across my back and sides.
I struggled through puberty, more awkward than most because of the lack of social exposure. I dated and learned the pain of rejection because of the nevus and massive scars on my body. I always felt like I was "damaged goods," but couldn’t help but believe that better things were to come. I went away to college on "early admissions" and married the first fellow who would take me. Within the first year of our marriage, I became pregnant. Everyone who knew about the nevus was frightened. They told me, "The baby will be deformed…I would die before the child was born…." I couldn’t explain to them how I knew that it wasn’t true. I had been "promised" children. I just knew it.
The first two obstetricians I saw rejected me as a patient. They advised me to "get an abortion before it is too late." The third doctor, fresh out of residency, believed the baby would be fine. He told me everything pointed to a healthy baby. I added the major of genetics to my studies. I combed the medical library looking for information on nevus babies like me. I could find no cases like mine anywhere in the library. (Editors’ Note: BJ spent weeks in the medical library searching for the first few references for the NN in 1982.) I grew stronger and healthier as the pregnancy progressed. My daughter was born in late summer, 1982. She had black hair, blue eyes, and fair skin. She was beautiful and normal in every way. I asked both my husband and my doctor to tell me the second she was born if she was without a nevus. They both quickly called out that she looked fine. My health continued to improve. I graduated from college. I decided to work in agronomic genetics, which meant I would spend most of my time outdoors. I wanted to escape the closed-in isolation of a childhood spent hiding and staring at hospital walls.
My husband was stationed overseas and fell in love with another. We divorced and I moved back closer to home. Not long after the divorce, I married again and quickly became the mother of 2 more children. Each time I went through the worry of having a normal child and wondering whether I would survive the pregnancy. Each time I remembered the simple "promise" that had been made to me when I was 11 years old. Each time I felt blessed relief at the moment of their births when the doctor called out that they were normal. Working hard in my new career and raising children, I stopped worrying about finding new information on giant nevi. It was a part of me that might some day kill me, but in the meantime, I decided to live my life to the fullest and enjoy my beautiful, bright, caring children. The children entered school and did well. I became active in teaching Sunday School and youth group activities. I was surrounded by happy children at home and at Sunday School. My career took off. Therapy helped me to heal painful childhood memories. My life finally felt like all I dreamed it could be.
Then one day, "The Mmmm Mmmm Song" by the Crash Test Dummies came on the radio. In the song, they describe a young woman that others had seen in the shower. She sounded like someone with multiple satellite nevi, perhaps a giant nevus like me. I suddenly realized that there must be at least one other person with a nevus. That same week, my father brought me an Orlando Sentinel newspaper article about Marie, a young teen with a giant nevus. The article included an address for others with giant nevi. After 34 years of believing I was alone in the world, I suddenly realized that there were others.
I quickly contacted the Nevus Network and met several people with a bathing trunk nevus just like me. We exchanged photos and I cried for several days remembering the terrible times I had been through and realizing there were about 400 others like me in America who were suffering, mostly emotionally. Many of us who are over 30 are badly scarred from unnecessary surgeries. Many of the women I have met so far who have survived to my age or past never had children because of the fear of dying or of having a child with a nevus.
(Editor’s note: There is apparently a very slightly increased risk of a woman with a giant nevus having a child with a giant nevus, although we have not yet had any such cases in the NN. As far as is known, there appears to be no documented increased risk of melanoma during or after pregnancy in a woman with a giant nevus and our group has so far had none. No information is available on the risk of men with a giant nevus fathering a child with a giant nevus, and so far we have no such cases in the NN.)
It seems that a nevus is just a random fluke of nature. It is just one of those things that happens and no one yet knows why. Someday we will. Now with the Nevus Network and a steadily growing data base of histories such as mine, parents of children who are born with a nevus will have more knowledge of what treatments and surgeries are really necessary. It will also help them to know what the future can hold and hopefully help to rid the medical community of much of the misinformation that I was given.
Speckled and Spotted Yours,
Gigi A., Lehigh Acres, FL
Full, Healthy Life Possible Even with Giant Nevus
Editors’ Note: Helga, age 57, has a giant bathing trunk nevus.
I was born in 1941 in Germany during the war. Hospitals were only used for serious medical problems, so I was born at home with my Father present on Christmas leave. I must have been a shocking surprise for them since I was adorned with a nevus shaped like a pair of knickers. The doctors seemed to know right away that it was a birthmark. They said there was nothing to be done to remove it and that it was harmless. My parents felt their only task was to accept the way I looked, and to help me to accept it, too. Times were more difficult then and death was a constant presence during the war. My birthmark was relatively unimportant when compared to finding enough to eat, having a home, etc.
From the very start, my parents decided they would raise me as if I were like everyone else. No shame and no hiding. My father frequently demonstrated in person that the "naked body is nothing to be ashamed of." We lived in hot climates like Texas and Alabama after we came to the US, so we often went swimming. Though the philosophy was "no shame" and though I went swimming with a regular bathing suit on, I myself wanted to hide from the stares and silence that surrounded me whenever I was exposed to new people. In retrospect, I could have handled it much better, with less emotional pain, if I had been given a choice about the type of suit to wear. It would have been preferable to be "shown" if and when I was ready for it. It would have been very helpful if someone had asked about my feelings regarding the birthmark so that I could have grown into healthier ways of coping. As it was, I was 35 years old before I found anyone who was interested in my birthmark experiences. Out of that stronger sense of self, I opted to wear a dance-wear type of swim suit when I was among strangers. In private relationships, I developed other ways of letting people know about my body. Now my openness comes out of a personal acceptance, one that grew from inner attitudes, and not from external edicts. I would encourage all parents of nevus children to remain sensitive to what the child is ready for, rather than having the parent decide what the child "ought" to do.
I was totally unaware that there were any health risks from having a nevus until I was in my 20's and first heard about the potential for melanoma. My prevention consisted of regular visits every 6 months to see Dr. Fitzpatrick, the nevus specialist in Boston, where I lived at the time. Twice in my life there were operations done on fatty lumpy lipomas, when I was 4 and when I was about 21. Both operations were a sharp reminder to avoid taking a knife to my skin, if at all possible, because the skin was so very thin, tore open easily and scarred massively. I spent 30 days in the hospital healing from the second surgery. Fortunately, each time biopsies revealed the tissue to be benign.
I consider myself lucky that the approach to my very giant nevus, was a "wait and see" approach, rather than a "let's do whatever is possible" approach. When I was about 35, a plastic surgeon offered to remove my entire nevus--via skin grafts--for free. I turned him down. My choice was clear: I'd rather take the risk of cancer than end up with a totally scarred body and years of hospital stays with untold complications and pain. When I learn of the complications that some of my birthmark buddies have ended up with after surgical treatment, I feel fortunate to have the functioning skin that I do. And I feel both sad and angry for what was done to them.
Most of the people who know me have no idea I have a nevus, though it covers nearly 40% of my body. Its location allows me to easily cover it with clothing. Thank goodness for Lycra, tights, and the opportunity to wear pants. Of course I live with clothing restrictions. I opted never to wear shorts. Nor low backed dresses. But after I survived the clothing claustrophobia of the 50's, choices were plentiful in the stores. I am presently 57, healthy, strong of body and spirit, living in a small town in southern Oregon for the last 18 years. Primarily I make my living as a self-employed photographer, with an emphasis on doing photodocumentary weddings, and other events. I think that being an outsider enhanced my ability to stand aside and observe. At other times in my life, I used other abilities, especially the textile arts.
Though I had a sequence of boyfriends in my life, I remain unmarried, and opted not to bear children. However, because I like being with children, I have made over part of my artistic studio into a wonderful playhouse. I hold playgroups and after school art classes. My life is filled with multiple projects going at the same time. I am glad to be alive, and most of the time I forget that I have a birthmark. There is so much more to life than how one looks. I am thankful to have remained healthy this long, and am also thankful for the contact with adult nevus buddies that this group provides. I hope to be able to help parents of nevus kids avoid panicky unnecessary operations, and to give them insight into some of the personal issues their child may be facing later.
Your Birthmark Buddy, Helga M, Ashland, OR
"Although the world is full of suffering…
it is also full of overcoming it." --Helen Keller
Unhappy Childhood Lengthens Life Span
Newspaper columnist Tony Snow recently mentioned a 76-year-long study in which unhappy children were found to live longer. Researchers discovered, much to their horror, that an idyllic childhood was a ticket to oblivion and that children with miserable youths had a 22% lower mortality risk. Dr. Howard Friedman of the University of California at Riverside said, "Contrary to our expectations, we have found that childhood cheerfulness is inversely related to longevity." The happier the childhood, the shorter the life span. This is great news for those of us with a nevus who may have suffered through a lot of unhappy times growing up!
Docs ‘In the Know’ say "NO!"
Physicians themselves are almost 50% less likely to go under the knife than any other single group, reports a recent study in the British Medical Journal. Their reluctance to undergo surgery is based on their knowledge of the procedure itself, as well as its risks, benefits, and alternatives. Doctors "in the know’ often feel the risks of surgery outweigh the benefits. This is a very interesting finding for those of us with nevi who have had many, many surgeries, often with substantial complications.
According to Dr. Nancy Snyderman, who writes a health column for Good Housekeeping, sunscreen may not be the best way to protect from sunburn and skin cancer. She states that two recent studies found that sunscreen did its job, three others showed that sunscreen didn’t prevent melanoma, and five other studies indicated that sunscreen users were actually more likely to develop skin cancer. Perhaps they stayed out in the sun longer than those who didn’t use sunscreen. Take-home message: continue to use sunscreen, but sit in the shade and wear a hat and long sleeves whenever you can.
Editors’ Note: BJ, age 42, has a nonremoveable bathing trunk nevus and enjoys all water sports.
Swimming can be a challenge for those of us with a nevus or for our kids with a nevus. But water sports are so enjoyable, it is well worth overcoming the obstacles. I think I have always liked all water sports so much because I was initially told I could not swim due to the nevus. I have a vivid memory of spending my first afternoon at the swimming hole when I was seven—on the shore watching my 2 brothers splash happily in the water. I told my mom, "Never again. I am staying home next time." Since I was too young to stay home alone and she had no money for baby sitters, she added "legs" and a back to a regular swimsuit and into the water I went! If I had been forced to swim, I think I would have disliked it a lot. I have now been swimming for 28 of my 42 years. I stopped swimming when I was in eighth grade because I could not handle the boys staring at me in my bloomer suit (while lots of other girls were in bikinis) and resumed swimming as a junior in college. I have been scuba diving for the past eight years and have about 80 dives recorded in my logbook. I also enjoy body surfing at the beach wearing a dive skin. I earned my Red Cross Senior Lifesaving and Water Safety Instructor certificates and even worked briefly as a lifeguard in college. Imagine—a person with a giant nonremoveable bathing trunk nevus working as a lifeguard! I wore a high racing back swimsuit at that time and had a large towel to carry strategically and drape over my scarred, nevus-covered thighs. Over the years, I’ve picked up a series of "How-To" tips to help you enjoy swimming more!
If the nevus/scars are usually covered with clothing, you must decide whether to expose the nevus/scars or not. In general, I think it is best for the nevus person to decide what they feel comfortable with. This decision can change throughout life. Young children may prefer to wear regular swim wear and swim early or late to minimize sun exposure. Teens and pre-teens may want to wear modified swim wear that covers the nevus. Adults may choose to wear regular swim wear at the adult health club and modified swim wear at the community pool, as I do now.
If the nevus is exposed, one must be prepared for stares, questions, and people withdrawing and leaving in fear. Other kids will often come right up to question you. These reactions are only natural. Humans have a genetic tendency to investigate and shy away from unknown situations. Think of what would have happened to our ancestors if they had run right up to their first saber-toothed tiger to pet it instead of checking it out first! So people will want to check us out carefully. They may be afraid that a nevus is contagious. They may wonder whether we are mentally unstable and deliberately trying to infect them. Giving them one of the Nevus Network "business" cards may help. Explaining that a nevus doesn’t hurt, isn’t contagious, and won’t rub off on them will also help. Most people get used to us after a while.
Because making explanations endlessly can get tiring, modified swim wear can be a big help. Think of this as minimizing others’ fears rather than hiding the nevus, which over time actually becomes the truth. This is an opportunity to get creative! A T-shirt and long swim trunks is an obvious choice for a boy with a back or bathing trunk nevus. "Legs" and a high back can be sewn in a regular swimsuit for a girl. This is what I wore swimming as a little girl. For those who sew, aquatards (Quik-Sew pattern 1995) look great for someone with a giant bathing trunk nevus. Leotards and tights also work well. The exercise wear sections of clothing stores can provide lots of possibilities. Nevus people with bumpy, misshapen nevi often find loose, flowing shirts and pants to be the best choice for swim wear. Items made of non swim wear material do wear out a bit faster due to chlorine damage than regular swim wear. For those with very extensive nevi or who wish to spend time on the beach in the sun, dive skins made of nylon Lycra come in fashionable styles for men, women, and sometimes children. These cover from high neck to ankles and wrists. Dive booties and gloves can be purchased for extra sun protection. Several companies also offer sun-protective swim wear, among them Sun Precautions (888-SOLUMBRA; email:firstname.lastname@example.org; website: www.sunprecautions.com) and Koala Konnection (specifically for children:888-465-6252; email:email@example.com). Nowadays, I actually get compliments about my modified swim wear and people ask me where THEY can get one!
Swimsuit coverups are essential. Extra large T-shirts work for everyone. Over-size T-shirt dresses (Kwik-Sew pattern 1830) can also occasionally be found at beach resort shops. When you find them, snap up two or three. With a T-shirt dress, one can change into and out of a dive skin in the midst of a group of men and women on a dive boat or anywhere else with no one the wiser. It is best to place the T-shirt or T-shirt dress over one’s head and torso and then wriggle out of the arms of the swim wear. Then one puts one’s arms through the sleeves and pulls the swim wear down to the waist. Then one pulls down the bottom of the swim wear while slowly and strategically allowing the T-shirt dress to flow downward. Reverse the procedure to put on swim wear. Pareos and muumuus also make good coverups. Pareos are good for torso coverups when one is combing one’s hair in the locker room, etc. because they can be tied so securely. A very thick opaque pareo can be made by sewing 2 beach towels together and trimming and hemming the ends. Ask the NN for the pattern if you are interested.
Changing into swim wear can be a daunting task. Before any water sports, it is generally a good idea to "scope" out a new locker room and pool area while wearing regular clothes first. Often one can find secluded areas behind poles or corners to make changing more comfortable. One also learns the usual "traffic" patterns of the facility. This minimizes the chances of being "ambushed" unexpectedly while changing. One can also change in the toilet stalls if there are doors present and the floor is not too dirty or wet. Or one can wear one’s swimsuit under one’s regular clothes. If one plans on taking swim classes, a "show ‘n tell" session would be a good idea. This eliminates the fear of being "found out" if someone occasionally catches a glimpse of our nevus.
I do wish more unusual-looking people would swim. In all my years of swimming, I can count on two hands the number of unusual-looking people I have seen changing in the locker room besides me. Yet one frequently sees extremely obese people changing right out in the open. If they can muster up enough courage, why not us? Just think of all the women with a mastectomy from breast cancer or men with a foot amputation who abandon swimming forever. If more unusual-looking people would swim, then the normals would get even more used to seeing all of us! After a while, they’ll barely give us a second glance. Swimming is so much fun and such good exercise, too. And it is essential if one wants to enjoy sailing, surfing, fishing or diving in safety. We’ll keep updating these pointers as time goes on.
Happy swimming to all!
--BJ, Lake Ridge, VA, with input from others.
Look for the Happy SPOTS in every day!
Poem Inspires Member
Here is a beautiful poem, written by Gerald Manley Hopkins, that Steve DB sent us. Steve has found this poem very inspiring throughout his daughter’s many surgeries. Steve’s daughter, Stephanie, has a small bathing trunk nevus that has been nearly completely removed with skin expanders:
Glory be to God for dappled things-
For skies of couple-colour as a brinded cow.
For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls; finches’ wings;
Landscape plotted and pieced-fold, fallow, and plough;
And all trades, their gear and tackle and trim.
All things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:
Pleaseremember to mail in your completed survey!! This will save us money spent on unnecessary reminders. Don’t forget to check out our website and sign up for the listserv. And if you would like penpals, please mail or e-mail your pen pal information with your request.
Nevus Network Nears 500!
The Nevus Network now has a total of 495 members. This is an amazing accomplishment considering how rare a large nevus is and considering we started with 2 people back in 1983. We have 172 males and 284 females. Some of our member information is incomplete and the gender is unknown in 39 cases. We have 103 members with a scalp-facial nevus, 93 members with a bathing trunk nevus, 76 with a cape/torso nevus, 64 with a back nevus, and 38 with an extremity nevus. 42 members are age 18 or older. 12 are age 40 or older. We have 464 members of Caucasian origin, 16 of Hispanic, 11 of Asian, and 4 of African. 84 members have been lost to follow up or have incomplete information. Please try to keep your information up to date so our statistics are as accurate as possible. We have had 9 deaths out of 495 members, giving us a mortality rate of 1.8 % and a survival rate of 98.2 %. We have 1 member with seizures, 1 with hydrocephalus (HDC), 1 with HDC and seizures, 11 with neurocutaneous melanosis (NCM), HDC and seizures, 2 with NCM and HDC, 1 with HDC and brain melanoma, 4 with NCM and seizures, 4 with NCM and developmental delays, 4 with speech delays, 5 with abnormal MRI’s and no other neurological problems, 1 with a heart defect, 2 with Dandy-Walker malformation, and 3 with severe psychosocial problems. Some members may fit into 2 categories.
We also have 8 members who have only small to medium satellite nevi and no giant nevus at all. For unknown reasons, these are our sickest members. Only 2 of the 8 are healthy. 7 of the 8 have NCM and 4 have died. Members of this tiny subgroup of 8 account for 44% of all of our deaths.
Of our 9 deaths, 2 have malignant melanoma of the brain after (in one case, 10 years after) complete removal of the giant nevus. Thus far we have had no deaths from melanoma of the skin in a giant nevus, although the medical literature is full of such cases. The other 7 died of NCM. We have 5 members who are surviving melanoma, giving us a 71% survival rate for melanoma. We have a total of 22 members with neurocutaneous melanosis, of which 7 have died. This gives us a 68% survival rate for NCM. We also have 2 members who are very, very sick. The great majority of our members are healthy and doing well, but our sympathy goes out to the few of us who are not.
Alexandra Has a Twinn Doll
Editors’ Note: Alexandra is 8 years old and has a facial nevus covering the upper half of her face.
My name is Alexandra and I am eight years old. I have a birthmark called a nevus on my face. Every time I go anywhere, people stare at me and say, "What’s that on your face?" Sometimes I don’t say anything, and other times I say, "It’s a birthmark." Some people say, "How come you have dirt on your face?" Others say, "Why do you have chocolate ice cream on your face?" One little kid at church even said, "You have poop and pee on your face, ha ha ha." Sometimes I feel like I’m the only person in the world who gets asked, "What’s on your face?"
I have two dogs, one named Fletcher, and the other named Tika. I also have a little sister named Yvonne. She doesn’t have any birthmarks. I am a very athletic girl. I have a doll, which is called a Twinn doll. It looks exactly like me. It even has a birthmark on its face like mine. Maybe sometime all of you can get one that has your birthmark.
When I was a baby, my birthmark used to be very, very dark. But now I have had seven chemical peels with phenol and my birthmark is now lighter. At school, all my friends, when they first become my friend, they get used to my birthmark. Now my friends don’t even notice it at all.
I have bumps under my left eye. I want to get rid of them. Today I went to a plastic surgeon and he looked at my face and recommended that I go to another doctor because he can’t do anything about it right now. But he said that there is a kind of laser that might be able to help me by getting rid of the bumps under my eye. In pictures you can’t notice them, but up close you can see them very well. I hope some day I can be happy with my face. Good luck!--Alexandra DP, Bloomfield Hills, MI
Deb DP, Alex’s mom, found the Twinn doll was very helpful to Alex in helping her cope with her facial nevus, even though the doll is custom-made and therefore a bit expensive. Deb stated, "Alex took the doll with her to church and a lot of other places. She got a lot of positive feedback because the doll is really cute and can be ordered with outfits to match the child’s." If you are interested in a Twinn doll, contact their web site at www.mytwinn.com or call toll-free at 1-800-469-8946.
With our deepest sympathy we must inform you of the deaths of Margot C. of Harelbeke, Belgium, Jon M.O. of Iva, SC and the daughter of Linda B. of Chesire CT. Margot had 30 satellite nevi only. She did not have a giant nevus. Margot developed hydrocephalus and neurocutaneous melanosis and died at the age of 28 months of NCM. Like Margot, Jon also had only satellite nevi and no giant nevus. He developed hydrocepahalus and was given a VP shunt at 4 months of age. He developed seizures and was diagnosed with NCM. He was treated with an experimental drug protocol and died at the age of 3 years of NCM. Like the others, Linda B’s daughter also had no giant nevus, just satellites. She developed hydrocephalus at 5 weeks and had 3 spots found on the brain. She died at the age of 9 months of NCM. These are the 7th, 8th, and 9th deaths in our group of 495 members. Our sincere condolences to the families on the loss of three of our nevus children.
Congenital Nevus Surveys Mailed to All Members
Results Presented Anonymously
The Nevus Network is finally conducting a very comprehensive survey of all of our members in order to help further medical research on congenital nevi. PLEASE take the time to fill out the survey and return it to us in the enclosed, stamped envelope. We hope to publish the results as soon as we can. All results will be presented anonymously. Many thanks to Randi C, who originally helped organize this survey for us in 1994. If you know of anyone who has not yet received a survey, please contact us or photocopy your survey for them. Mail all completed surveys to the Nevus Network, PO Box 305 West Salem, OH 44287. We hope to get as close to 100% participation as we can. If we do not receive your survey, we will give you a reminder call. Please help us hold our costs down by promptly sending in your survey. This is your chance to help your family and other nevus families in the future!
Nevus Network to Have Listserv on Internet Soon!
The ©Nevus Network continues to grow and grow! Because we are a completely private charity and all our volunteers lead full lives outside of the nevus, changes happen slowly but surely in our group. Our website continues to improve. We have a simple website packed with information but with minimal graphics, so downloading occurs very quickly We plan to increase the amount of information available to the public up there in the near future. Feel free to browse the site at www.nevusnetwork.org. All ten of our back newsletters are now available on the website. If you joined our group recently, you may find it helpful to peruse the back newsletters. We also have quite a comprehensive photo album up there. If you do not have a computer, you can still browse the site via your local public library’s computers.
Thanks once again to the many people who have donated funds to the Nevus Network: Loretta B, Mary W, Deb DP, Gary S, Elise L, Helen C, Frank V, Carola M, and Nancy B, and Pat H all gave very generously. Many others donated smaller amounts. 100% of your donations goes to fund NN activities. Since we are a completely private charity, we have no bureaucratic expenses at all. All of our members volunteer their time and expertise. Our expenses consist almost entirely of paper, postage, stamps, and website and internet fees. Because of the survey, this newsletter has become a very expensive mailout for the group. Please consider skipping a couple of fast food meals and brown bagging lunch instead and donating the savings to the Nevus Network. We really need more donations! If you would like to help the group in any way, e-mail us at firstname.lastname@example.org or drop us a line! We’re always looking for volunteers and donations.--The Editors, BJ and Kelly
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