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<P><A HREF="index.htm"><IMG
SRC="logo.jpg" BORDER=0 WIDTH=254 HEIGHT=169></A> <A
HREF="nevlogo.htm">About Our Logo "Dotty"<FONT
SIZE=-5>sm</FONT></A></P>
<B><FONT SIZE=7><P
ALIGN="CENTER">The Nevus Network</FONT><FONT
SIZE=2>©</FONT></B></P><BR>
<P ALIGN="CENTER"> </P>
<P><HR></P>
<B><FONT SIZE=6><P
ALIGN="CENTER">The Congenital Nevus Support Group<BR><P
ALIGN="CENTER">2023 - Our 40th Year!</B></FONT></P>
<P><B><P ALIGN="CENTER">We are
the very first congenital nevus support group ever founded! And we are so happy that now we have so many
other "baby" nevus support groups all around the world! We are hopefully going to find the time to
update our stats this year, which we have been wanting to do for several years
now, but life in other directions has always been intervening.... We'll get to it soon! Please bear with us! </B></P>
<UL>
<P><HR></P>
<B><FONT SIZE=6><P
ALIGN="CENTER">Large Brown Birthmarks, Giant Congenital Pigmented
Nevus, Bathing Trunk Nevus, Giant Hairy Naevus</B></FONT></P>
<UL>
<P><HR></P>
<B><FONT SIZE=5><FONT COLOR=00FF00><P
ALIGN="CENTER">"When things don't happen for the best, we
make the best of what happens!"
</B></FONT></P>
<P><HR></P><FONT SIZE=3>
</FONT></P>
<B><FONT SIZE=5><LI>The Nevus Network
offers:</B></FONT> </LI>
<UL>
<B><FONT SIZE=5><LI>Educational
Material/Newsletters/Penpals</B></FONT>
</LI>
<B><FONT SIZE=5><LI>Emotional
Support/Phone Calls/Photo Exchange</B></FONT> </LI>
<B><FONT SIZE=5><LI>Contacts with others
who have a large brown birthmark called a Congenital Nevus, sometimes also
spelled "nævus," and for those with a
related condition called <LI>Neurocutaneous Melanosis
(NCM)</B></FONT> </LI>
<P><BR>
<UL>
<LI><FONT SIZE=4><A
HREF="npals.htm">Learn About Nevus Network Penpals
Now!</A> </LI></UL>
</UL>
</UL>
<P><HR></P><FONT SIZE=4>
<P> 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 listed below. 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 with about 6 or so
years of follow up. We would guesstimate
that over a lifetime of 80 years, there might be around a 10% risk of death for
those with a garment nevus and perhaps 5% lifetime risk for those with a
head/extremity nevus. Considering our
unusual skin, this is quite low! 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 depend
on donations to keep our shoestring support group running out of our homes, so
please consider making an annual donation to our group. Feel free to browse our web site for further
information! </P>
Here are a list of our keywords:</P>
<P><B> giant brown birthmark, hairy birthmark,
bathing trunk nevus, BTN, swiming trunks nevus, giant
naevus, giant congenital pigmented melanocytic nevus, GCN, congenital pigmented
nevus, giant hairy pigmented nevus, giant hairy nevus, malignant melanoma,
neurocutaneous melanocytosis, neurocutaneous
melanosis, NCM, satellite nevi, multiple congenital melanocytic nevi, MCMN,
leptomeningeal melanosis, giant congenital naevus, naevus pigmentosus
giganticus, nævus géant congénital, größer kongenitaler naevus, jättenevus, nävus, kongenitalen riesenpigmentnävus, schwimmhosennaevus, tierfellnävus,
kongenitaler nävuszellnävus,
kongenitale melanozytäre nävi, naevus pigmentosus congenitalis, nevus gigante congénito, melanosis neurocutanea,
melanosis neurocutánea, neurokutane
melanose, melanosis leptomeníngea,
nevus melanocíticos congénitos,
znamiona barnikowe melanocytowe gigantyczne, nevi congeniti melanocitari giganti,neirokutannyi, malignes melanom
melanoblastoz,先天性巨痣,神经性皮肤黑色素瘤 </FONT></B></P>
<B><FONT SIZE=6><P> Join the Nevus Network just...
</B></FONT><A
HREF="mailto:info@nevusnetwork.org"><B><FONT
SIZE=5>email us now!</B></FONT></A><FONT
SIZE=4> </P>
<P><HR></P>
<FONT SIZE=2><P>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.</P>
<P><HR></P>
<FONT SIZE=2>©</FONT><B><FONT
SIZE=6>Nevus Network Goals</B></FONT> </P>
<FONT SIZE=3>
<P>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. <BR>
2. To generate a newsletter periodically. <BR>
3. To share general medical and psychosocial information.
<BR>
4. Since all currently used treatments can result in
significant complications, to remain neutral regarding any treatment.
<BR>
5. To provide all information in a general way without legal
or medical responsibility. <BR>
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 help us a lot. <BR>
7. To maintain a confidential mailing list from which
statistics will be periodically published. <BR></P>
<P><HR></P>
<BR>
<B><FONT COLOR=FF0000><FONT SIZE=4>Read
all about our most recent <A HREF="skintwin.htm">SkinTwin Weekend,</A> a
special weekend of "recovery" open to all those with a giant nevus
over the age of 16. E-mail us for more
info if you are interested in attending the next one! <BR></FONT></FONT COLOR>
<BR>
<P><HR></P>
<BR>
<B><FONT SIZE=5>TO REMOVE, OR NOT TO REMOVE:
THAT IS THE (WRONG) QUESTION!
<BR><BR>
<FONT SIZE=3>Many people feel it is up to the parents
to decide whether to remove their child's nevus or not. This, in fact, is incorrect. The right question to ask is this: Is it technically possible and reasonably
easy to remove this particular nevus? Will the results be successful, meaning will
the child be able to "pass" as "normal" or nearly
"normal?" Check out our surgical risk/benefit analysis <A
HREF="nev_info.htm">here</A> to find out information on your
particular nevus!</FONT><BR>
<BR></FONT></FONT COLOR>
<BR>
<P><HR></P>
<BR>
<B><FONT SIZE=3>TO NEVUS
PARENTS:</FONT><BR>
<FONT SIZE=3>This website has a huge amount of
information on it. Having a child with a
nevus is very traumatic for any parent.
We ask you to slowly and carefully read the entire
site with an open, inquiring mind.
You might want to put aside any pre-judgements, at least
temporarily. Why shut down options
before thoroughly evaluating the pros and cons?
So often, we humans choose "willful blindness," when we choose
to ignore what we can see because we don't want what we can see to be
true. It is easy to ignore reality, but
it is not possible to ignore the consequences of reality for very long.... The consequences tend to pop up in one's face
eventually, no matter how hard we might try to deny them. Selling false hope of a "cure" is
a very seductive promise to new nevus parents.
Yes, it is possible that medical science may one day be able to
"undo" the extra pigment of a nevus faster and to a greater degree
than the natural fading process does, but that won't "cure" the
unusual look to nevus skin, the lack of sweat glands, the lack of the normal
fatty layer that pads the skin, the risk of melanoma, or the many other
abnormalities that we nevus people have.
<BR> <BR>
Charlatans over the centuries have become rich selling false
hope to desperate people. And you
yourself can easily determine someone's authenticity by simply following the
money trail they leave. We don't sell
false hope here at the Nevus Network.
Instead, we offer the long, slow, hard process of nevus recovery for
those few courageous enough to face the truth head-on. And what is that truth: that most of us are
"stuck" forever with our nevus and/or bad scars and our success in
life will be determined by how well we learn to cope with all of it. Here at the Nevus Network, we don't make
money off desperate parents and endless nevus removal surgeries. Ours is a labor of love. You can easily determine for yourself how
well nevus surgeries work on giant nevi:
simply go to a nevus gathering and count how many people are
"showing off" their surgical results in skin-revealing clothing. Usually the count is
near zero! Why? Because usually the surgical scarring from
present nevus removal techniques isn't good enough to "show off,"
that's why.... Most with a giant nevus
still feel more comfortable "covering." <BR><BR>
As a parent, if you are able to
keep an open mind with broad, unlimited horizons, you will learn so much from
this website. Eventually, you and your
child will be able to comfortably take the blinders off yourselves. You will become a better parent, and you will
be better able to help your child cope with their nevus, with less stress and
trauma for all. It really is a win-win situation! And isn't reality much better than an
illusion, after all?!<BR></FONT><BR>
<FONT SIZE=2><FONT COLOR=FF0000C>"Willful
Blindness," a book by Margaret Heffernan. </FONT><BR>
<P><HR></P>
<B><FONT COLOR="#215E21"><FONT
SIZE=4>Having problems handling stares, questions, or teasing? Learn how to use the
Explain-Reassure-Distract technique.
Explain: "I have a birthmark.
I was born with it."
Reassure: It doesn't hurt and it isn't contagious. It won't rub off." Distract:
"Did you like the painting we did in art class?" For lots more information and practical,
age-appropriate techniques on handling stares, questions, and teasing, please
check out www.changingfaces.org.uk. This
is a wonderful website for those with facial differences, and the same
techniques work great for all of us with all types of giant nevi! <BR></FONT>
<BR>
Everything has beauty, but not everyone sees it. --Confucius
<BR>
<P><HR></P>
<FONT SIZE=4><FONT COLOR=FF0000C>And.... BROWN
IS BEAUTIFUL, after all! ....Most nevus children are born with nevi in varying shades
of coal and lighten up to beautiful shades of cocoa and coffee over the
years. </FONT><BR>
<P><HR></P>
<P ALIGN="CENTER">Cute little Sophie and her
arm nevus--a photo story! <A
HREF="sophiearm.htm">click here</A></P>
<P><HR></P></B></FONT><FONT
SIZE=4>Maggy belated realized she received a wonderful gift from her father
when she was a little girl growing up with a giant torso nevus........ <A HREF="maggystory.htm">Click
here</A> to find out what it was!</P>
<P><HR></P>
<P ALIGN="CENTER"><FONT
COLOR="#215E21"><FONT SIZE=4>DATA ACCUMULATING ON RISKS OF
ANESTHESIA USE IN INFANTS, CHILDREN </P><BR>
Exposure to anesthetic and sedative medicines may cause
brain damage in infants/children. The
FDA has entered into a partnership with the International Anesthesia Research
Society to launch a program called
called SmartTots (Strategies for
Mitigating Anesthesia-Related Neurotoxicity in Tots). Although there is no proof--yet--that
anesthesia causes brain damage in infants and children, research has shown that
it does occur in young animals exposed to these medicines. The brain damage may occur as a higher risk
of learning disabilities, especially in language and speech. The risk may vary depending on the type of
medicine, length of time used, frequency, and age, with babies/infants seeming
to be at higher risk. Many of the older
nevus kids in our group often seem to develop learning disabilities and
emotional and behavioral problems. How
much higher the risk is compared to the general population or compared to a
nevus kid without exposure to anesthesia is not known. More research is needed. New nevus parents naturally would like a
quick "cure" for their child's nevus.
Poof, it's gone! We nevus kids
would like that, too! Unfortunately, it
doesn't exist yet. But there are many
worse things in life than living with a giant nevus, and one of them would be
brain damage associated with removal.
Avoiding repetititive surgeries and exposures
to anesthesia would make sense until more answers are available. Even adults have problems with
anesthesia. We have one adult member who
unfortunately needs repetitive surgeries and she feels
her memory/thinking don't come back to
"normal" for about 4 months after each exposure to anesthesia. What we nevus kids really need--and almost
never get--is counseling--to learn to cope with the nevus, with the scars, and
with all the other issues involved.
Counseling is the one most important thing to do to help a nevus
child. And our families need counseling
just as much as we do! Info from JAMA,
May 4, 2011 Vol 305, No 17, p. 1749. </FONT></FONT
COLOR></P><BR> <BR><BR>
<P><HR></P>
<P ALIGN="CENTER"><FONT
COLOR="#215E21"><FONT SIZE=4>ADVERSE CHILDHOOD EXPERIENCES
AND HEALTH AND WELL-BEING OVER THE LIFESPAN </P>
<BR>
Contrary to popular myth, children are NOT resilient! Without intervention, adverse childhood
experiences (ACES) can result in long-term disease, disability, chronic social
problems, addictions, and early death.
We nevus kids have even more adverse childhood experiences than
"normal" kids due to our nevus.
A common situation, for example, is the child with an alcoholic father
who swears off alcohol due to the family chaos and dysfunction, but starts
medicating the stress and pain of growing up in such a family by smoking or
overeating starting around age 12, continues to smoke or binge through young
adulthood, is unable to quit smoking or lose weight in middle-age due to
semi-permanent brain changes related to the early childhood trauma, and dies
prematurely of emphysema or diabetes or heart disease. Or the child may pick up alcohol, recreating
over and over the familiar chaos of childhood and die prematurely while driving
drunk. We humans seek chemical relief in
the form of alcohol, excess food, illicit drugs, nicotine
or many other addicting substances/activities from the ongoing effects of old
trauma, often at the cost of accepting future health risks. These situations are commonplace and often
intergenerational. ACA, Adult Children
of Alcoholics or other family dysfunction, is very
helpful in recovering from such a family situation. <BR></P>
Researchers are finding that the passage of time does not
usually diminish traumatic symptoms--and older age can actually
aggravate them. In fact, in
middle and old age, the past returns.
This is why ACA is full of people in their fifties, not in their
thirties. Decades after WWII, for
example, many Holocaust survivors show signs of delayed post-traumatic stress
disorder. We become what we were, so to
speak, unless we ask for help. <BR></P>
And we nevus kids have even more trauma than usual due to
our nevus. We must learn to cope with
our reaction to it, our family's reaction to it, other people's reaction to it,
the stress of "showing" or "hiding," bullying, stares, the
stress of repetitive surgeries/hospitalizations, and the stress of failed
surgeries with bad scars, to name only some of the trauma. No wonder we are maxxed out!
Most of us probably develop mild cases of PTSD. What is the solution: counseling and intervention to lessen the
effects of the trauma over a lifetime.
For more information, please see Adverse Childhood Experiences Study
(CDC and Kaiser Permanente www.ACEstudy.org) and the trauma research done by
Ann Jennings, PhD at www.TheAnnaInstitute.org Both of these sites have some
fantastic information! Very helpful to
parents to lessen the trauma to their nevus child.
</FONT></FONT COLOR> </P>
<P><HR></P>
<P ALIGN="CENTER"><FONT
COLOR="#215E21"><FONT SIZE=4>PREGNANCY AND INCREASED RISK OF
MELANOMA </P>
<BR>
Melanoma may be deadlier during pregnancy, researchers at
the Cleveland Clinic recently found. Pregnancy hormones, which decrease the
immune system so that the half-foreign (from the father) baby can survive, may
also fuel melanoma. The researchers found that women diagnosed with melanoma
during pregnancy or within one year of giving birth were five times more likely
to die of the cancer. They were seven times more likely to have their cancer
spread, and nine times more likely to have a recurrence compared to nonpregnant
women. This is not a surprise to us, as
we suspected this more than 30 years ago. How much higher the risk would be in
a woman with a giant nevus is unknown, but more likely it would be higher.
Still, the overall risk is low. In our
group, we have had about three of our members with a giant nevus who developed
pregnancy-related melanoma that we are aware of. There may be others we do not
know about. But we have had many, many others who gave birth without a
problem. However, it is something we
nevus women should take into consideration before we become pregnant. If we are not really keen
about becoming a mommy, then we might skip it in our currently overpopulated
world and choose child-free instead and lower our melanoma risk. Several women in their 50's and 60's who have
had children have recently mentioned to us that childbearing isn't all it's
cracked up to be, and they almost wish they had remained child-free. Women with post-partum depression might
agree. One can have a very fulfilling
life either way.
The article recommends more diligent skin checks in
pregnancy and avoidance of sun exposure, especially in childhood. Dermatologists often recommend sunscreen, but
we feel that is actually inadequate and that staying
indoors, finding shade, and wearing thick, sun-protective clothing when
outdoors (we are outside ALL the time in full sun with sunglasses, a
wide-brimmed hat, gloves, and wearing winter-weight army fatigues over a
T-shirt) is actually more effective.
Reference: Risk factors and
outcomes of cutaneous melanoma in women less than 50 years of age. Lead author
Brian Gastman, MD. Journal of the American Academy of
Dermatology, January 20, 2016.
</FONT></FONT COLOR> </P>
<P ALIGN="CENTER"><FONT
COLOR="#215E21"><FONT SIZE=4>Does Development of Vitiligo
Mean Less Risk of Melanoma for Those of Us with a Giant Nevus?
</P><BR>
Recent evidence suggests that people with vitiligo (complete
loss of skin pigment with areas of completely white skin) have a reduced risk
for both melanoma and nonmelanoma skin cancer. Hansje-Eva Teulings
and colleagues of the University of Amsterdam, The Netherlands, reported in the
British Journal of Dermatology in 2012 that people with vitiligo seem to have a
68% reduced risk of melanoma and a 72% reduced risk of nonmelanoma skin cancer.
People with vitiligo may have natural protection against skin cancer because
the genetic variants that cause vitiligo are the opposite of the ones that
predispose to skin cancer. If you have one set, you apparently cannot also have
the other set. The genes that turn off
pigment cells completely apparently mean that the ones that turn on pigment
cells to the max cannot occur. No word
yet on whether this applies to those of us with a giant nevus. Many nevus people do seem to develop
vitiligo starting in their 40's and 50's.
If you have either vitiligo or skin cancer, please let us know and we
will publish the results!
</FONT></FONT COLOR> </P>
<P><HR></P>
<P ALIGN="CENTER"><FONT
COLOR="#215E21"><FONT SIZE=4>WAYS TO BE WICKED??? LONG LIVE EVIL??? REALLY???!!! </P>
<BR>
One of the dancers in this video from the upcoming movie
“Descendants 2” has a nevus. And while
it’s great that a person with a nevus is a fantastic dancer, the theme and the lyrics in the video fall very short…. And we
know that what others say and think is very
influencing, because the negative comments of others about our nevus had a huge
negative influence on most of us with a nevus.
Lyrics in a popular movie have similar negative influence. Some listeners have mentioned that they feel
they can even hear a lyric in the background of the video that sounds like
“Wanna try a dick, chick?” Let’s look at
some of the ways to be wicked: hurting
others, bullying others, lying, cheating, stealing, killing, destroying the
earth, driving while drunk and killing someone, doing drugs and dying of an
overdose, using food as a drug and eating oneself into obesity and premature
disability and death, having lots of sex partners and getting sexually
transmitted diseases, bringing children into the world and being unable to care
for them properly, abusing children….. My, the list is endless! Now it seems many people want to learn about
more ways to be wicked, because the first movie was quite popular, but I don’t. I’ve been on the receiving end of a lot of
these ways to be wicked (and I’ve done some of them myself). And I found them all to be hurtful, dysfunctional and damaging—to me and to others. No, I don’t want any more STD’s,
so I don’t want to “try a dick.” I want
to learn about more ways to be functional, to treat others the way I would like
to be treated, to help others, to minimize the dysfunctional behavior
(you can call that “evil”) in my own
life, to find more peace and serenity, to be a positive force, a force for
good, not a force for evil… And what
about you?…
</FONT></FONT COLOR> </P>
<P><HR></P>
<FONT SIZE=5><B><FONT
COLOR="#871F78">WOULD YOU LIKE TO MAKE A DONATION?</B><BR>
</FONT> </P>
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<P><B><FONT SIZE=4><FONT COLOR=FF00000> 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 check, payable to the Nevus
Network, to help all of us out? We
donate sometimes 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. If we do not get enough help, we
may eventually be forced to close the Nevus Network down. 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 33 years now and we have no conflicts of
interest to disclose. Our information is
as unbiased as we can present it. We try to give you the complete truth! 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. Many
members have financial problems nowadays, and we do, too, as our work hours
have been reduced. But what can you
commit to keep this invaluable resource going?
What can you do to help? Here are
some ways: $90 for website fees, $40 for
envelopes, $75 for stamps, $100 for Xeroxing.
THANK YOU! <BR><BR>
</FONT COLOR> </FONT SIZE></P>
<BR>
<P><B><FONT SIZE=4>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 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!
</P>
<P>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! </P></FONT></B>
<P><HR></P>
<P> <B><FONT
SIZE=4><A HREF="nev_info.htm">GENERAL INFORMATION ON GIANT
CONGENITAL NEVUS</A></B></FONT></P>
<P>Frequently Asked Questions: <BR><BR>
<FONT
SIZE=3>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?</FONT
SIZE=3></P>
<P><HR></P>
<P><BR>
<FONT SIZE=4><A
HREF="ref.htm">SELECTED MEDICAL JOURNAL ARTICLES ON CONGENITAL
NEVI</A></FONT></P>
<P><HR></P>
<FONT SIZE=4><P>NEVUS NETWORK MEMBERS: TREATMENT
AND CANCER STATISTICS</A></P>We have somewhere between 2000-3000
members in our group. If you would like
a copy of the most recent treatment and cancer statistics for our members,
please send $10 to help defray expenses to Nevus Network, PO Box 305, West
Salem, OH 44287 Enclose a postal mailing address with
your request. Thanks!</P>
<P><HR></P>
<P><BR>
<FONT SIZE=4><A
HREF="wondercritique3.htm">CRITIQUE OF THE BOOK
"WONDER"</A></FONT></P>OR--WHAT NOT TO DO IF YOU
ARE FACIALLY- OR ANY OTHER WAY-CHALLENGED!
<P><HR></P><P><BR>
<P><FONT SIZE=4><A
HREF="letter12.htm">OUR LAST
NEWSLETTER</A></FONT><B><FONT SIZE=3> Contents: </B>Yes, our
last newsletter appeared in 2002! When
we get a large block of time, we will send out another newsletter and update
our stats, as we perhaps 2000-3000 members now. Please send us your current e-mail
address! Headlines of the last
newsletter: 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
</P>
</FONT>
<P><FONT Size=2>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.... </FONT></P>
<P><HR></P>
<P><FONT SIZE=4><A
HREF="album.htm">PHOTO ALBUM</A></FONT></P>
<P><FONT SIZE=3>Lots of photos of birthmark
buddies here. Feel
free to look for your skin twin!</FONT></P>
<P><HR></P>
<P><FONT SIZE=4><A
HREF="ltrs.htm">BACK ISSUE
NEWSLETTERS</A></FONT></P>
<P><FONT SIZE=2>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!</FONT></P>
<P><HR></P>
</B></FONT><FONT SIZE=4>HOT TOPICS!</A></P>
Here we'll discuss various topics of interest to those
involved with a giant nevus. Feel free
to submit an entry!  <A HREF="hottopcs.htm">Click
here</A></P>
<P><HR></P>
<P><B><FONT SIZE=4>ON LINE
REGISTRATION:</B></FONT><FONT SIZE=3> 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! </FONT> <BR>
<BR>
<A
HREF="mailto:info@nevusnetwork.org"><B><FONT
SIZE=4>Register here</B></FONT></A>
<P><HR></P>
<B><FONT SIZE=3><FONT
COLOR="#215E21">HAVE A QUESTION OR WANT TO TELL YOUR STORY?
</B><BR> </FONT></FONT> </P>
<P><FONT SIZE=2>E-mail the Nevus Network now and
we'll publish selected letters!</FONT><BR>
<A
HREF="mailto:info@nevusnetwork.org"><B><FONT
SIZE=4>Ask a question here</B></FONT></A></P>
<P><HR></P>
<P><B><FONT SIZE=5>For Further
Information</B></FONT> <BR>
<FONT SIZE=4>Call or Write: </P>
<P>The Nevus Network <BR>
The Congenital Nevus Support Group <BR>
PO Box 305 West Salem, OH
44287 <BR>
(419) 853-4525 (405) 377-3403 <BR>
web site:
http://www.nevusnetwork.org <BR>
e-mail:
info@nevusnetwork.org </P>
<P>If you would like to receive an info packet, please
send a check for $10 to defray expenses to the Nevus Network, PO Box 305, West
Salem, OH 44287 and include your mailing address. There are no dues or fees to join. Anonymity
available if desired. If you would also
like a copy of our most recent stats, then add $10 with your request. Thank you!</FONT><BR>
</P>
<P><HR></P>
<P><B><FONT SIZE=4><A
HREF="nevspaninfo.htm">INFORMACION BASICA EN
ESPANOL</A></FONT></B></P>
<P><HR></P>
<P><BR>
<B><FONT SIZE=4>OTHER
RESOURCES:</FONT></P>
</B><P><FONT SIZE=3>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: <A
HREF="resources.htm">resources</A></FONT>
<P><HR></P>
<B><FONT SIZE=4><P>History of the Nevus
Network</B></FONT> </P>
<P><FONT SIZE=3>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, which does
happen, but rarely, 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 2000-3000 members! Fortunately, Roni
is one of only a few deaths in the group so far.
Welcome to all! </P></FONT>
<P><HR></P>
<P><BR>
<P><B><FONT SIZE=4>Disclaimer
<BR></FONT></P>
<P> <FONT
SIZE=3> 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! <BR>
<P>
<B>The
Nevus Network </B></P>
<P><HR></P>
<P>This page last updated on September 12, 2023.   Copyright © 2023 Nevus Network.
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