Backman M and Kopf A. Iatrogenic effects of general anesthesia in children:  considerations in treating large congenital nevocytic nevi.  J Dermatol Surg Oncol 1986;12:363-367.  Good discussion of some of the risks of anesthesia in children undergoing surgery and suggests that the best time to schedule surgery, considering psychological and physical factors, is between 6-9 months of age or 8-12 years of age.

Bauer B. and Vicari F. An approach to excision of congenital giant pigmented nevi in infancy and early childhood. Plast Reconstr Surg 1988;82:1012-1021.   Review of surgical excision of various types of nevi, has graphic photos with substantial scars.

Bett B. Large or multiple congenital melanocytic nevi: Occurrence of cutaneous melanoma in 1008 persons. J Am Acad Dermatol 2005;52:793-797.   The first half of our Nevus Network stats. A big thank-you to everyone who entered themselves or their child into our database!

Bett B. Large or multiple congenital melanocytic nevi: Occurrence of neurocutaneous melanocytisis in 10008 persons. J Am Acad Dermatol 2006;54;767-777.   The second half of our Nevus Network stats. Another big thank-you to everyone entered into our database.

Calderwood Mays M, Mayhew I, and Woodard J. A giant congenital pigmented nevus in a horse. Am J Dermatopathol 1984;6 Suppl:325-30.  Giant nevi don't often occur in animals, but here is one example in a pretty filly.

Castilla E, Da Graca Dutra M, and Orioli-Parreiras, I. Epidemiology of congenital pigmented naevi:  I.  Incidence rates and relative frequencies.  Brit J of Dermatol 1981;104:307-316.  One of the largest studies to attempt to determine how often pigmented nevi occur: 1,083 of us in 531,831 births in S. America, but the figures may not be accurate due to under-reporting.

Chrétien-Marquet B, Bennaceur S, Cerceau M, Fernandez R, Saouma S, et al. Cutaneous expansion using enforced position in the treatment of large skin defects. Pl Reconstr Surg 1994;93:337-343. Describes an interesting alternative method to using tissue expanders in places they don't work well, such as arms, legs, and skin folds. Needs less total number of operations compared to skin expanders. Some of the photos show good results, but nonetheless, it is a myth that "plastic surgery leaves no scars."

Conway, H. Bathing trunk nevus. Surgery 1939;6:585.  Discussion of BTN and nice photos of what some of us look like!  The 2 1/2-year-old girl is especially cute...

Crim M. Giant congenital nevus and melanoma.  Amer Fam Phys 1985;33:167-168.  Brief article discussing large nevi with good photo of middle-aged man with a lumpy-bumpy-warty type back nevus who developed melanoma of the nevus in his 30's-40's.

Cruz O, Patrinely J, Stal S. and Font R. Periorbital giant congenital melanocytic nevus. Arch Ophthalmol 1992; 110:562-563. Article describes 2-year-old girl with facial nevus completely surrounding the right eye. This is a difficult nevus to have and almost all of the time, the treatment leaves noticeable scars.

Dawson H, Atherton D, and Mayou B. A prospective study of congenital melanocytic naevi:  progress report and evaluation after 6 years.  Brit J of Derm 1996; 134:617-623. Discussion of 133 British children with large nevi.

DeDavid M, Orlow S, Provost N, Marghoob A, Rao B, et al. Neurocutaneous melanosis:  clinical features of large congenital melanocytic nevi in patients with manifest central nervous system melanosis. J Am Acad Dermatol 1996;35:529-38.  Article discusses 33 nevus people with neurocutaneous melanosis out of 289 with giant nevi.

DeDavid M, Orlow S, Provost N, Marghoob A, Rao B, et al. A study of large congenital melanocytic nevi and associated malignant melanomas: review of cases in the New York University Registry and the world literature.  J Am Acad Dermatol 1997;36:409-416.  Sister article of preceeding one which discusses 34 nevus people with skin melanoma out of 289 with giant nevi.

De Raeve L and Roseeuw D. Curettage of giant congenital melanocytic nevi in neonates. Arch Derm 2002 138:943-948.   Discusses curettage in newborns during the first 2 weeks of life as a way to reduce the black color of nevi. Works OK in some cases, but a couple of our members who had it done decided to "re-do" with tissue expanders. Ouch! It's tough on nevus kids to go through extra surgeries....Of course, the risk of increasing melanoma by "riling" up the skin rather than decreasing it by removing the top layer of pigment cells still needs to be addressed. But wouldn't it be wonderful to live in a world where others would "oooh" and "aaaah" over our unique spots instead?

Doust J and Del Mar C. Why do doctors use treatments that do not work? Brit Med J 2004;328:474-475.  For many reasons--including the doctors' inability to stand idle and do nothing! May help explain why doctors have used many useless treatments on nevus patients that they knew would not help that particular nevus person. Meanwhile we get stuck dealing with the long-term negative side effects from the useless treatments, sometimes long after the doctor is dead and buried.... Sad the cure is often worse than the disease...

Ersek R. Comparative study of dermabrasion, phenol peel, and acetic acid peel. Aesthetic Plast Surg 1991; 15:241-243.   Article discusses some possible treatment improvements for facial nevi. The treatments aren't perfect, but may help. They do leave nevus cells behind which could become cancerous.

Frieden I, Williams M, and Barkovich A. Giant congenital melanocytic nevi:  Brain magnetic resonance findings in neurologically asymptomatic children.  J Am Acad Dermatol 1994;31:423-9. One of the earlier articles on brain MRI in us. Nine of 20 nevus kids without symptoms had brain MRI's showing abnormalities. Six had NCM, 1 had a brain cyst, another had a Chiari type I brain malformation, and the last had mild birth trauma.

Friedman R, Ingram Jr A, Rohrich R, Byrd H, Hodges P, et al. Risk factors for complications in pediatric tissue expansion. Plast Reconstr Surg 1996;98:1242-1246.   Discusses all the many problems that can arise, including 40% complication rate for those with 2 or more expander sessions. Complications are higher in arm and leg expanders (possibly less room, higher pressure, less blood supply), higher in children under age 7 (child squirms more, so more movement out of place and more bag punctures), higher with internal expander ports under age 7 (same reason), and higher with fast inflation (too much stretch and not enough blood supply). Tissue expanders work best in those with a smaller-size giant nevus, no satellites, plenty of "good" skin around to stretch, and lots of time, but it's an ordeal no matter how you slice it. Nevus kids with huge nevi and lots of satellites won't get much benefit from expanders.

Gallico III G, O’Connor N, Compton C, Remensnyder J. Kehinde O, et al. Cultured epithelial autografts for giant congenital nevi.  Plas and Recon Surg 1989;84:1-9. Discusses use of cultured skin in removal of giant nevi. Most of our members who have tried cultured skin have not had good results: surgeries too complicated, too long, and too many. The skin is too fragile without a dermis and springs "leaks." The skin shrinks so that a little girl's breasts can be pulled under the armpits with cultured skin used to replace a back nevus. It is not often used now.

Gari L, Rivers J, and Kopf A. Melanomas arising in large congenital nevocytic nevi:  a prospective study. Ped Dermatol 1988;5:151-158.  Discusses 47 nevus people entered in the New York University nevus registry with 1 of the 47, a baby girl, dying of brain melanoma. Life is certainly fragile and precious...

Gondo K, Kira R, Tokunaga Y, and Hara T. Age-related changes of the MR appearance of CNS involvement in neurocutaneous melanosis complex. Pediatr Radiol 2000;30:866-868.  Interesting article which describes how nevus spots on the brain, like nevus spots on the skin, seem to fade away as we get older. In a boy with many satellite nevi and seizures, as the brain spots disappeared and the MRI improved, the seizures improved. Great news!

Grin C, Driscoll M, and Grant-Kels J. The relationship of pregnancy, hormones, and melanoma. Sem Cutan Med Surg 1998;17:167-171. Pregnancy before, during, or after the diagnosis of melanoma does not appear to influence 5-year survival rates. Exposure to birth control pills or hormone replacement therapy does not appear to increase the risk of melanoma. Of course, these studies were in normal women and whether they hold true for women with giant nevi is unknown.

Hale E, Stein J, Ben-Porat L, Panageas K, Eichenbaum M, Marghoob A, et al. Association of melanoma and neurocutaneous melanocytosis with large congenital melanocytic naevi--results from the NYU-LCMN registry. Br J Dermatol 2005;152:512-517. An update of DeDavid's articles listed above.

Hamm, H. Cutaneous mosaicism of lethal mutations. Am J Med Genet 1999;85:342-345.   Proposes a convincing genetic concept for the cause of neurocutaneous melanosis and giant nevi: in genetic terms, a lethal autosomal dominant noninheritable spontaneous mutation with cutaneous mosaicism. That means it happens simply by chance in some skin cells, which only survive because other skin cells nearby are normal. For those interested in genetics, there is also an explanation for the few familial cases occasionally observed: individuals heterozygous for a paradominant mutation would be phenotypically normal so that this allele could be transmitted unperceived through many generations. Giant nevi and NCM would only become manifest when a postzygotic mutation of the corresponding allele occurs, giving rise to a cell clone and forming a mosaic patch, such as one of our satellites. So now you know the rest of the story!

Hogan D, Murphy F, and Bremner R. Spontaneous resolution of a giant congenital melanocytic nevus. Ped Derm. 1988;5:170-172.   Fascinating article which describes the disappearance of a cape nevus in a little girl! She is left with a slightly scarred, hardened area where the nevus was as an adult. Scientists think her own immune system "zapped" the nevus! Now this is what we need to figure out how to do in all of us. While we are waiting for that to happen, it is sort of neat to be "chocolate and vanilla" people.

Ka V, Dusza S, Halpern A, Marghoob A. The association between large congenital melanocytic naevi and cutaneous melanoma: preliminary findings from an Internet-based registry of 379 patients. Melanoma Res 2005;15:61-67.  So far, there were no cases of melanoma that developed in the group--good news for us!

Kadonaga J, and Frieden I. Neurocutaneous melanosis:  Definition and review of the literature.   J Am Acad Dermatol 1991;24:747-55. Defines and discusses NCM.

Kaplan A, Itabashi H, Hanelin L, and Lu A. Neurocutaneous melanosis with malignant leptomeningeal melanoma. Arch Neurol 1975;32:669-679.  Describes a 27-year-old African-American man with a cape nevus and satellites who died of NCM with brain melanoma. Fortunately, this only happens to a few of us...

Karagas M, Stukel T, Dykes J, Miglionico J, Greene M, Carey M, et. al. A pooled analysis of 10 cases-control studies of melanoma and oral contraceptive use. Brit J Cancer 2002;86:1085-1092.   This study of normal women showed no increased risk of melanoma associated with birth control pills. Obviously, we do not know if that would also be true for women with giant nevi, but it is somewhat reassuring.

Karagas M, Zens M, Stukel T, Swerdlow A, Rosso S, Osterlind A, et. al. Pregnancy history and incidence of melanoma in women: a pooled analysis. Cancer Causes & Control, 2006;17:11-19.  This article found that normal women who had large families at a young age had less melanoma compared to women who had no or fewer children later in life. Obviously once again, we don't know if this would apply to women with giant nevi.

Koot H, de Waard-van der Spek F, Peer C, Mulder P and Oranje A. Psychosocial sequelae in 29 children with giant congenital melanocytic naevi. Clin Exp Dermatol 2000 25;589-593.  Discusses some of the psychosocial problems of learning to cope with a giant nevus. Most of the children preferred a burnlike scar over a nevus. As nevus adults, we can understand that. It is easier to explain a burn to peers than to explain a birthmark, especially as many people still have the Dark Ages mentality that birthmarks are a punishment from the devil. (Only recently can we tell them it's merely that our "scatter factor" is not totally normal and we exhibit cutaneous mosaicism!) Not until we are adults do we realize that often the scars are worse to deal with on a daily basis than the nevus was (unless the nevus, for example, is a lumpy-bumpy-warty type with hard-to-clean cracks). But by the time we are old enough to realize all that, we are stuck for life with our irritating, itchy scars.

Kopf A, Bart R, and Hennessey P. Congenital nevocytic nevi and malignant melanomas. J Am Acad Dermatol 1979;1:123-130.  General discussion of nevi and describes the beginnings of the first US registry for those with congenital nevi at New York University.

Kopp J, Noah E, Rubben A, Merk H, and Pallua N. Radical resection of giant congenital melanocytic nevus and reconstruction with Meek-graft covered Integra dermal template. Dermatol Surg 2003;29:653-657.   Describes a 43-year-old nevus person with a lumpy-bumpy nevus of the entire back. She developed several melanomas in her nevus and needed to have it entirely removed. This was done with Integra as the dermis or bottom layer of the skin with split-thickness skin grafts taken from her thighs as the top layer of skin. Considering that she really needed entirely new skin for her whole back, the results are astounding. This skin wouldn't pass the "stare" test though (nevus treatment so good with scars so faint that no one stares at the area), as the new skin has a "fish scale" look to it because of the way it is made. But when one is desperate to cover an open wound due to cancer treatment, that doesn't matter.

Kuwahara M, Hatoko M, Tada H, Tanaka A, Yurugi S et al.   Distortion and movement of the expander during skin expansion. Scan J Plast reconstr Surg Hand Surg 2003;37:22-27.   Discusses complications that can result if the expander moves out of position, such as expanding the nevus instead of good skin! Gives pointers on avoiding problems.

Lorentzen M, Pers M, and Brettville-Jensen G. The incidence of malignant transformation in giant pigmented nevi.  Scand J Plast Reconstr Surg 1977;11:163-167. One of the first studies to determine the risk of melanoma in nevus people like us. There were 151 nevus people in Denmark in their national registry from 1915 to 1975 and 4.6% developed melanoma.

Marghoob A, Dusza S, Oliveria S, and Halpern A. Number of satellite nevi as a correlate for neurocutaneous melanocytosis in patients with large congenital melanocytic nevi. Arch Dermatol 2004;140:171-175.   Discusses the finding that the more skin satellites a nevus person has, the higher the risk for "satellites" in the brain in the 379 nevus people listed in the Nevus Outreach registry.

Marghoob A, Schoenbach S, Kopf A, Orlow S, Nossa R, et al. Large congenital melanocytic nevi and the risk for the development of malignant melanoma.  Arch Dermatol 1996;132:170-175. 92 nevus people were followed for 5 years and 3 developed brain or body melanoma giving a risk of 4.5% for development of melanoma.

Maves M, and Lusk R. Tissue expansion in the treatment of giant congenital melanocytic nevi.  Arch Otolaryngol Head Neck Surg 1987; 113:987-991.  One of the first articles to describe the use of tissue expansion to remove giant nevi.

Narayanan H, Gandhi D, and Girimaji S. Neurocutaneous melanosis associated with Dandy-Walker syndrome.  Clin Neuro Neurosurg 1987;89:197-200. Describes a 2-year-old Indian boy who had a bathing trunk nevus, developmental delay, seizures, and Dandy-Walker syndrome. The boy developed neurocutaneous melanosis and melanoma and died at age 4.

Neubauer, R and Golden C. Can postoperative cognitive dysfunction be prevented?   J Am Phys Surg 2005;10:22.   Mentions that cognitive dysfunction or "brain slowing" from surgical and anesthetic stress occurs in 35% of younger patients (<40 years old) and an even higher percentage of older patients at 1 week after major surgery. Our adults who have had major nevus surgery can agree with that! Several stated that it takes their brains and memory 6 months to recover from the unavoidable damage that occurs with surgery. Guess none of us nevus people with surgeries will ever become Einsteins... The article goes on to propose that hyperbaric oxygen may help prevent the "brain drain" that occurs with surgery. Interesting idea.... Moral of this article is the least amount of surgery, the better.

Otsuka T, Takayama H, Sharp R, Celli G, LaRochelle W, Bottaro D, et al. c-Met autocrine activation induces development of malignant melanoma and acquisition of the metastatic phenotype. Cancer Res 1998;58:5157-5167. Possible cause of giant nevi and NCM discovered! Lab rats genetically induced to have an abnormal variant of a body protein called "scatter factor" with its receptor called "c-met" develop giant nevi and melanoma just like us. So now when someone asks us, "How did you get those spots?" we'll be able to say, "I have abnormal scatter factor!"

Quigley D. A case of enormous pigmented mole.  JAMA 1924;82:2029. One of the older articles about us showing a nevus person with one of the rarer types of nevi--thickened with cracks and fissures.

Rhodes A, Wood W, Sober A, and Mihm Jr M. Nonepidermal origin of malignant melanoma associated with a giant congenital nevocellular nevus.   Plast Reconstr Surg 1981;67:782-790. Describes a 21-year-old man with a torso nevus which had been "completely" removed by many operations with skin grafts from ages 3 to 19 who then developed melanoma in the MUSCLE of the chest wall UNDERNEATH the grafts.

Rokitansky K. Ein ausgezeichneter Fall von Pigment-Mal mit ausgebreiteter Pigmentirung der inneren Hirn- und Rückenmarkshäute.  Allg Wien Med Z 1861;6:113. This is the very first time one of us was described in the medical literature--by the famous Viennese pathologist Karl Rokitansky (1804-1878). A 14-year-old girl with a torso nevus with satellites, developmental delay, and neurocutaneous melanosis is discussed. From what we can glean from the 150-year-old German, she apparently died of the NCM. The article describes her autopsy findings.     A short life for her, common in the 19th century, but she'll live on forever with us... Check out the original article here, which we reprint with permission of the publishers.

Rompel R, Moser M and Petres J. Dermabrasion of congenital nevocellular nevi: experience in 215 patients. Dermatology 1997;194:261-267.  Describes dermabrasion as being most effective if done in the newborn period with almost no improvement from it seen after 12 months of age. Since nevus cells are left behind, it may increase or decrease the risk of melanoma. The cheek nevus photo isn't a perfect fix, but looks pretty good after dermabrasion. A bit sad to see the photos in a way....Sad that we don't live in a world where we can be speckled and spotted naturally. Everyone in the world wants to be unique it seems... And we who actually are unique are willing to be knifed and hacked to look like everyone else...

Ruiz-Maldonado R. Guidelines for treatment of giant congenital nevi. Ann Derm Vener 1999;126:792-794. One of the more common sense articles written by a doctor on treatment of giant nevi. Question: what action should be taken regarding giant nevi? Answer: there is no universal answer. Each child with a giant nevus is unique and each treatment or non-treatment decision must be made individually.

Sbitany U and Caldwell E. Treatment of a giant congenital hairy nevus of the ear.  Plast and Reconstr Surg 1986;78:242-244. Ears are not easy to treat, and many members just leave them as is. This little girl had hers removed with skin grafts, leaving lots of scars.

Shaw M. Malignant melanoma arising from a giant hairy naevus. Brit J Pl Surg 1962;15:426-431. Scary article which describes an 8-year-old boy with a right torso nevus whose parents had part of it skin grafted and part of it dermabraded for cosmetic reasons. He developed melanoma centered exactly on the scar line between the grafted and dermabraded parts 10 years later. This was excised but he died of metastatic melanoma 2 years later at age 20. The possibility that the melanoma was caused by the surgery is discussed.

Siebert J and Longaker M. Salvage reconstruction of an extensive facial deformity due to congenital giant hairy nevus. Plast Reconstr Surg 1998;102:2414-2419.  Describes fix-up of botched plastic surgery of a little girl with a right-sided facial nevus who had more than 20 operations as a child to try to remove it, leaving her with severe scars as bad or worse than the original nevus. At age 40, she had 10 more surgeries over about 2 years, some using tissue expanders, to fix up the previous botches. It is sort of sad society can't accept us as us. Sad we go under the knife essentially just to people-please others, to get them to leave us alone....

Streams B, Lio P, Mihm M, and Sober A. A nonepidermal, primary malignant melanoma arising in a giant congenital melanocytic nevus 40 years after partial surgical removal. J Am Acad Dermatol 2004;50:789-792.  Very interesting article! A 44-year-old nevus person with a left arm and shoulder nevus had the arm portion partly removed by skin grafts between the ages of 4 to 7. She apparently couldn't handle the stress of dealing with medical people for regular skin checkups afterward, so didn't get any done. Many of our nevus adults refuse to go to the doctor for the same reason. But she did go 2 weeks after an itchy bump developed in her grafted forearm skin, which turned out to be melanoma! It was excised. Now did the removal rile up the cells and cause melanoma 40 years later? If she hadn't had the nevus removed, would she have developed cancer? The cancer didn't occur in the unremoved portion, but in the removed portion...No one yet knows the answers... Moral of this story: even if we can't force ourselves as nevus adults to get regular skin checkups, at least we should go when something weird happens to our skin...no matter what our age.

Takayama H, Nagashima Y, Hara M, Takagi H, Mori M et al. Immunohistochemical detection of the c-met proto-oncogene product in the congenital melanocytic nevus of an infant with neurocutaneous melanosis. J Am Acad Dermatol 2001;44:538-540.   Cute pics of mice induced to have giant nevi! Describes how the same abnormal body protein called "scatter factor," which causes the mice to develop giant nevi and melanoma, has been found in a 4-year-old boy who had many satellite nevi all over his skin and who developed neurocutaneous melanosis.

Ueda S and Imayama S. Normal-mode ruby laser for treating congenital nevi. Arch Dermatol 1997;133:355-359. Sometimes laser helps, especially with facial nevi, which have a low rate of melanoma. The problem with laser is that the burn that zaps the extra pigment may also rile up the nevus cell to turn cancerous.

Valentine B, McManus P, Knox A. Malignant transformation of a giant congenital pigmented nevus in a dog. Vet Derm 1999;10:127-130.   A male Golden Retriever was born with a nevus of the hind leg, one of the few animal cases of a nevus in an animal. The dog developed melanoma in the nevus with metastases.

Vergnes P, Taieb A, Maleville J, Larregue M, and Bondonny J. Repeated skin expansion for excision of congenital giant nevi in infancy and childhood.  Plast Reconstr Surg 1993; 91:450-455. Yes, it can be done, but newer studies show a 40% complication rate for anyone who has had 2 or more prior expansions, so it's not going to be easy.

Voigtlander V, Jung E. Giant pigmented hairy naevus in two siblings. Humangenetik 1974;24:79-84.  It doesn't happen often because nevi aren't directly hereditary, but here is one family with 2 kids each with a giant nevus. Scientists think this happens from isolated spontaneous mutations.

Woodrow S and Burrows N. Malignant melanoma occurring at the periphery of a giant congenital naevus previously treated with laser therapy. Brit J Derm 2003;149:885-917.   Another scary article about partial treatment of nevi possibly causing cancer, this one with laser! Describes a 27-year-old nevus person with a smallish back nevus who had monthly cosmetic laser treatment for a year starting at age 16 on the upper part of the nevus. The melanoma occurred as a new black spot on her back right at the edge of the lasered area. Now did the laser cause this? No one yet knows.. But the melanoma didn't occur in the non-lasered part... It certainly is suspicious, since laser is a burn which can "rile" cells up to become cancerous. Take-home message: we need to do our "all-over" skin checks. And think carefully before undergoing cosmetic treatments that could cause cancer later on.

Zack L, Stegmeier O, and Solomon L. Pigmentary regression in a giant nevocellular nevus:  a case report and a review of the subject.  Pediatr Dermatol 1988;5:178-83. Another person whose immune system has "zapped" their nevus to a normal color!

Zemtsov A, Lorig R, Bergfeld W, Bailin P, and Ng T. Magnetic resonance imaging of cutaneous melanocytic lesions.   J Dermatol Surg Oncol 1989;15:854-858. One of the first articles on use of MRI in nevi.

Zutt M, Kretschmer L, Emmert S, Haenssle H, Neumann C, et al. Multicentric malignant melanoma in a giant melanocytic congenital nevus 20 years after dermabrasion in adulthood. Dermatol Surg 2003; 29:99-101. Describes a 46-year-old nevus person who had dermabrasion done twice of his left upper back nevus at ages 26 and 28 to try to lighten the nevus. 20 years later he developed melanoma in the dermabraded area. This was excised and covered with a skin graft taken from his thighs. Again, one has to wonder if the dermabrasion "riled" the cells to cause cancer or not?

Here are some other books which can be helpful in coping with a nevus:

Davidow, Joie. book: Marked for Life.   Describes the experiences of the author growing up with a port wine stain birthmark (similar to Mikhail Gorbachev’s) on the left side of her face…. In many ways, her story is our story…the realization one is “different,” the name calling in school (Every parent is fearful of their child being made fun of, so one wonders why there are so many parents who don’t teach their children not to name-call), the dysfunctional family issues we all have in our own families, the difficulties with the opposite sex, the stares when “showing,” the shame when hidden by makeup and not “showing.” It’s all there—her story, our story, the story of anyone “marked for life”—and yet in so many ways, just another face, just another person as she gradually finds out. A great read!

Grealy, Lucy.   book: Autobiography of a Face.   Describes the author’s experience as a childhood cancer survivor with a facial disfigurement. She developed Ewing’s sarcoma at age 9 and had a part of her jaw removed followed by years of radiation treatments. Her story is again our story in many, many ways…. Those of us who look different on the exterior all have the same issues to confront, including dysfunctional family issues. The author undergoes more than 30 surgeries over many years trying to fix the unfixable. She spends (?wastes) a good deal of her life pre-op, op, or post-op. Nowadays, she would probably have been a good candidate for a jaw transplant, but those were nonexistent then. She gets hooked on pain meds from the surgeries and falls into a very chaotic lifestyle, chronically in debt fighting off bill collectors while trying to be a writer. (One would wonder why someone with a facial disfigurement would have such difficulty with greed. Living above one’s means is nearly always a sign of inner greed. One might think that material possessions would be useless to people like us because the things of this world cannot buy us the one thing we deeply desire above all things: to be “normal.”) The author dies suddenly at age 39, probably from a drug overdose. The prologue implies that it was her cancer and subsequent scarring that really killed her, but it wasn’t. It was how she dealt with her disfigurement…. Poignant and well worth reading on how not to cope!

Schlessinger, Laura.   book: The Proper Care and Feeding of Husbands.   Self-explanatory! A great read for anyone, but especially for nevus gals who want to avoid the hassle of finding a new special someone after a divorce or breakup. Men are simple creatures and not that hung up on physical looks, so keeping a good guy isn't that difficult and this book shows us ladies how!

Simmons, Rachel.   book: Odd Girl Out: The Hidden Culture of Agression in Girls, 2002.   A wonderful book which describes the alternative aggressions which are the hallmark of female bullies-- slights, innuendos, nonverbal gesturing, ganging up, behind-the-back talking, rumor spreading, namecalling, ostracism by cliques, note passing to favorites, silent treatment, bossy treatment, nice-in-private and mean-in-public behavior or the opposite, among many others. All this is done to win the popularity contest that life becomes for females, which women and girls have been socialized to believe determines their actual worth. A must read for female nevus kids, who are often the target of female bullies. And we find that being cast out is a blessing in disguise for some girls, as many are guided into a more centered, authentic self-awareness. As a nobody, a nevus girl has the freedom to be what she really is, unlike any of the popular girls. The book provides some suggestions for decreasing the victimization, but doesn't mention the best one of all: homeschooling!

Tyler M.  book: The Skin You Live In, 2005.   A really cute rhyming children's book about the wonderful skin we all live in!

Wiseman R.   book: Queen Bees and Wannabes--Helping Your Daughter Survive Cliques, Gossip, Boyfriends,and Other Realities of Adolescence, 2002.   Another great book about surviving the shark pond that school becomes for most girls (and boys). This book shows how a girl's place in her social pecking order can affect whether she'll be a perpetrator, bystander, or victim of violence when she's older. The drawings showing all the location of the "sharks" in a girl's high school are very revealing. There are a couple chapters devoted to boys' experiences surviving the minefield of school, too. Kids deserve a lot of credit just for getting up in the morning, knowing they might face another "lunch tray moment," the anxiety-ridden experience of finding a place to sit at lunch. Suggestions are given for school survival, but again the best one of all isn't mentioned: homeschooling! All group schooling generally turns into a popularity contest and nearly all the socialization is negative. Homeschooling eliminates most of those negatives.