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A low technology approach
to vitiligo, published on the information super highway.

COPYRIGHT
First Revision,
Copyright © 1997 by Eric Fricker
Second Revision, Copyright © June 1998 by Eric Fricker
This book may be copied
and distributed as long as this paragraph is also included. I have considered
sending this book to a printer, but now I feel the Internet is the place for
this book. Publishing the book through the normal channels would require a
lot of effort, money and time - things I have very little of. Now I can
promote it via email and word of mouth. It is available free of charge, with a suggested value of one US
dollar per download or printing.
Actually any donation would be appreciated. So, if after reading it you feel
helped by it, please send an expression of your gratitude to Eric Fricker, 164 Jamaica Drive, Cocoa Beach, FL 32931. Or
click the following icon to speed up the process. 
Thank you very much for all of the gifts I have received to date.
This
online book was updated on Friday, June 01, 2007.
If there was anything you
disliked, send your constructive criticism to fricker3@yahoo.com.
If you are interested in
contacting me about vitiligo, please do so on the VSIG
list. That way everyone will have the benefit of our conversation.

Notice
The information in
this book is intended as general reference only, not as a substitute for
medical consultation or treatment. Those who are ill or taking medication
should not make dietary changes without professional supervision.


About This Book
This book is the
story of my daughter's skin disease and how it changed the lives of our
family. We have witnessed and recorded her tremendous recovery, centered
around nutritional changes. Since vitiligo is seen in only one percent of the
population, there is not much information available on the disease. This book
has been helpful to many people with vitiligo as well as parents of children
with vitiligo.

Comments About This Book
Overly processed foods
including white flour, mayonnaise, vegetable oil, hydrogenated oils, dairy products,
and TV dinners will, in time, damage anyone’s immune system to some extent. I
am happy for you and your family that Emily has recovered, and I hope that
others will learn the valuable lessons which you have so generously provided.
Lee Hitchcox, DC, Author of Long
Life Now
I read your book and
Bravo!!! I'm extremely impressed with the book, and I hope everyone with
vitiligo stumbles
upon it somehow.
H. "kee" Wanakee,
Wanakeeh@aol.com
Man, I must say,
"Well done!" Really.
John Petrik, JEPetrik@aol.com
Your book is
wonderful. Even more impressive than the content is the fact that you have
put it on the Internet for all to look at.
Name withheld by request
Eric, I was moved by
your story concerning Emily. Emily is a very lucky child to have parents, who
have struggled to help her and find something to make her life easier. Bravo
for you and your wife.
Margaret Roberts
You have both given me
hope and identified my feelings (especially your wife's account).
Dottie Sunio
Thank you Eric for
your inspiring, very detailed chronicle of your daughters vitiligo. It's now
3:00 am and I could not stop reading it. It gave me the most hope I have ever
had about my own vitiligo which started a year ago. I think you should
publish it (if you can), and a copy should go to all doctors dealing with
this condition. The before and after photos were amazing!
M. Phillips
It was the first thing
I found on the net about vitiligo that made any sort of sense to me. The
photos you've listed are especially encouraging.
Nuki

Success Stories
Here are a few
success stories, I read them on the Vitiligo
Support and Information Group (VSIG). These people have all had success
repigmenting.
1. Emily Fricker
2. Wanakee's web page.
3. Adam Rich, adamjrich@home.net
Sent: Monday, August
30, 1999 8:30 PM
To: VITILIGO@MAELSTROM.STJOHNS.EDU
Subject: progress
This is the Vitiligo Support and Information
Group (VSIG)
------------------------------------------------------------------------
Here is a few words of motivation.
I am 20 yrs old, and I have had vitiligo for
as long as I can remember. It affects nearly every part of my body. I have
never seen repigmentation, and have never tried any sort of treatment for my
vitiligo, until I subscribed to this list. Here I learned about the different
vitamin supplements and decided to give them a try... and to my surprise, I'm
starting to notice some freckling! One patch in particular, was about the
size of a silver dollar and has started freckling so much that it looks more
like a collection of smaller spots than one large one. Here again is the
supplements I'm taking daily:
600mg St. John's Wort Concentrate
2000mcg B-12
2000mcg Folic Acid
300mg Milk Thistle Concentrate
Length of time: 1-2 months
Sun exposure: None
4. Beverly McDonald, bzmac@OLS.NET
Sent: Tuesday,
August 31, 1999 9:18 AM
To: VITILIGO@MAELSTROM.STJOHNS.EDU
Subject: [VITILIGO] dosages I am
taking......
This is the Vitiligo Support and Information
Group (VSIG)
------------------------------------------------------------------------
Hi..
I wrote a few weeks ago that I have started
repigmenting ..and a few wrote in and wanted me to post what I am doing:
400 mg Milk Thistle
2000 mcg B12
2000 mcg folic acid
3 Allergy Caps by Twin labs..3 x daily
(vitamins)
l000 vitamin C
DMAE-H3 (liquid Paba) mixed with Kiss My
Face Calendula/honey lotion on my spots
l5 minutes to 30 minutes of natural sunlight
a day after applying the liquid paba/lotion
I have a juicer, I am using daily.....also a
low fat (yuk) diet of veggies, some chicken and fish...NO RED MEAT ..no
sugars ..salt....or dairy products. Trying to drink 8 glasses of water a day
and exercising to keep my mind clear...... that and chasing after 3 kids... I
have an appointment next week with the dermatologist...but she will not let
me use the pseudo cat. cream...that everybody is talking about. She is
against it ..even though I have "begged". I'll try again...but as I
am repigmenting, although slowly ..without it ..think
Ill just stick to what I'm doing now!
much luck to everyone.......
Beverly
5. Heather, Heatherb007@cs.com
From:
Heatherb007@cs.com
Sent: Tuesday, September 07, 1999 6:41 PM
To: fricker3@yahoo.com
Subject: (no subject)
Eric, I have finally gotten on the net. I
talked to you about my son and his vitiligo. We saw the dermatologist and she
confirmed my fears but gave no hope. I spoke with you and you suggested I
begin by taking dairy out of his diet. Two weeks later you cannot see any
pigmentation loss. AMAZING I am so grateful to you for your work and hope
Emily is doing great. I’m sorry this is so patchy but this is the 1st e-mail
I have sent. Hope you feel special. My e-mail is heatherb007@compuserve.com.
Hope to here from you soon.

Dedication
This book is
dedicated to my wife Susan and our children Kyle, Emily and Katie, as well as
the many people suffering from vitiligo.

You Go
You came into my
life,
was there a reason?
Wherever Emily goes, you go,
you pesky vitiligo.
One day it will be just
her,
healthy through and through.
Slowly you'll leave her,
until the day that you're gone.
I won't miss you a bit.
I won't see you again,
you pesky vitiligo. One day I will say,
vitiligo, where did you go?
Was there a reason that
you left?
We made many changes,
which one worked?
You are a puzzle, vitiligo.
Here is another vitiligo poem I really liked.

Acknowledgments
I want to thank the
members of the Vitiligo
Support and Information Group (VSIG) for their help. When I was having
trouble handling the mental aspects of this disease, they were there to
comfort me.
Thanks to Susan Rizzo for
being there, when we needed to learn how to cook good vegetarian meals.
Thanks to Mark and Jill
Vigeant for teaching me the importance of eating raw vegetables and vegetable
juices for healthy skin and for Mark's library of alternative health related
books.
I am also grateful to
Sandy Konkel for the mind-body connection, Dr. Montes for his book, Vitiligo, Nutritional Therapy, John Robbins for the
food, body and environment connection, Dr. John McDougall, Dr. Dean Ornish
and Dr. Neal Barnard for their low fat approach to health, and Lee Hitchcox
for his exercise inspiration. Thank you to Earle Harris, also known as the
Peas Pilgrim, for helping us live a simpler life.
Special thanks to Joe
Cabezut for proofreading the text, Alec Patvalds for helping me surf the net
via email when the web was still young, and Mike McCracken for converting my
VCR pictures into JPG images. Thanks to Jeff Palin for his help scanning
images and Sue Pagano for the most excellent picture of Emily on the
cover.
Thank you, Emily, for
opening our eyes.

Table of Contents
Introduction
Chapter 1 Our Search For Information
Chapter 2 Parents' Perspective
Spontaneous Repigmentation
Chapter 3 Lifestyle
Why Have We Done This?
How Did We Change Our Food Choices?
Chapter 4 Diagnosis
Chapter 5 Treatment
Psoralen
Chapter 6 Typical Weekly Meal Plan
Chapter 7 Don't Give Up
Timeline
Comparison (before and after)
Chapter 8 VSIG and Other Resources
Animal Testing
Conclusion
Appendix A Email
Appendix B Dr. Montes
Appendix C My Cholesterol Levels
Bibliography
Glossary
About the Author

Introduction
One of my favorite
things to do, when I have the time, is to put together a jigsaw
puzzle. A jigsaw puzzle comes with a picture, the way it should look
after it has been put together. We knew how Emily’s skin should look, and
this is a story of how we helped her put the pieces together.
I thought we might start
working our vitiligo puzzle out by visiting our pediatrician. Our son had
been climbing trees earlier and had some funny looking spots on him. The
pediatrician told us that they would just fade away and they did. So we
thought the same would happen for Emily. We were in for the shock of our
lives. We were given a brochure explaining vitiligo, a skin disease that
turns your skin milk-white in patches.
The goal of this book is
to present a method that an average person can follow to achieve permanent
results. These results do not apply just to vitiligo, they affect all aspects
of your health. This includes everything from your cholesterol level to high
blood sugar, as well as pigment. Most of the things we did to treat Emily's
vitiligo are things we should all do to support health and support the body's
ability to heal itself.
This book deals with
trying to repigment the vitiligo plaques to match the original skin pigment.
Others have been successful in depigmenting the remainder of their skin to
match the vitiligo plaques. Still others have successfully used camouflage to
cover the vitiligo plaques. All of these are valid options and are discussed
regularly on the Vitiligo
Support and Information Group (VSIG). Many people we have talked to, have
had success with homeopathic doctors. I don't have any experience with them,
but before we made any progress I was considering it. We viewed each of these
as potential options, that if we were not successful in repigmenting, we
would consider them more closely.
To every Ph.D., there is an equal and opposite Ph.D.
B. Duggan
In fact, we did visit a local
acupuncturist at one point. He said Emily's vitiligo was too far along for
him to help her. He was very negative and right in front of Emily he told my
wife that she would never get better. I would love to show him her progress
now. It is sad to think that health care providers can be so callous. That
negative attitude could easily have taken the wind out of our sails. I am
lucky to be an eternal optimist and we persisted. Health care providers
should mention to their patients that although they may have nothing to
offer, there are other treatment approaches that they don't know anything
about, allopathy, homeopathy, naturopathy, mind body counseling, stress
management techniques, ayurveda. Never take away the patient's hope and say
they will have to live with it. Say, "I don't have anything to offer but
there may be other choices available down the street".
We did not get much help
from the local medical doctors. I got the feeling that they wanted to work
with someone that had a disease they knew more about. When I started asking
questions they started getting "short" with me. How could I
question the MD? I apologize to caring doctors reading this out there, this
is just my experience with a few local doctors. Vitiligo is not something you
can handle in a fifteen minute office visit, the initial visit should take at
least an hour, with lots of questions, answers and some hand holding. I know
there are caring doctors out there. They are just so hard to find when you
first get this disease. My suggestion is to read as much as you can, because
you must be more knowledgeable about this disease than the doctors you talk
to. That is the only way you will be able to judge the treatments they offer.
After reading this story you will see the lengths that a father will go to,
when the medical community tells you there is nothing that can be done.
I am not a doctor, so
consult your physician before attempting any self-treatment. Be warned that
you will probably know more about vitiligo than your family doctor after reading
this book and spending a few days on the Internet. Discuss the ideas that you
read about with your doctor. With an open mind and some perseverance you will
succeed in repigmenting.
It's time to take the
shrink-wrap off of the puzzle and get to work.

Chapter 1
Our
Search for Information
Every year for
Christmas someone gives me a jigsaw, it's almost a family tradition. It is
the only time of year that I have time to work it. When we started working
with Emily and her vitiligo I envisioned it as a large jigsaw.
We Needed Information
Vitiligo was not and
still is not a household word. The Internet was still young. I had a hard
time finding any information about vitiligo. Learning about the National
Vitiligo Foundation Inc. gave us some relief. It was probably the best thing
that came from our visits to the dermatologists. We had so many questions, we
found that sending mail was too slow and cumbersome, phone calls were
expensive. The Internet was where we found fast answers and some comfort.
I had experience using
email. A friend and I were experimenting at work with email mailing lists. We
downloaded a huge file of mailing lists that discussed all kinds of issues.
None of them were specific to or remotely connected to vitiligo. I had seen
the power of these mailing lists, their ability to connect like-minded
individuals was fantastic. One person could send a question out to hundreds,
in some cases thousands of people, interested in the same subject. You could
get an answer back in a few minutes to a few hours. For a parent that needs
an answer this could be a godsend. It turns out to be a good way to meet
friends as well. Members of VSIG
join for information and support. As they learn more from other members, they
can then offer support to new members. There is something healing about being
able to support and help another. I can't tell you how many people have
contacted me and told me that they no longer feel alone in the world with
their vitiligo. These are people who had lived for many years, now middle
aged adults, who had never spoke to anyone else who had vitiligo.
The implications of this
new tool are not easily seen by the uninitiated. I remember when I first
suggested the idea to the National Vitiligo
Foundation Incorporated (NVFI). They thought it was an interesting idea
but couldn't see any practical use. Today 750
people from around the world (more than 30 countries and at least four
languages) discuss vitiligo and offer support to those that need it. VSIG
has become a close-knit Internet community. We argue, complain, piss and
moan, try to hypothesize a cure, cry, and laugh. We discuss similarities and
differences. Most importantly we talk to others who have had success
repigmenting. This is where research dollars should be spent, studying the
success stories, not studying chickens.
Another reason these
mailing lists appealed to me was that when you deal in email you don't
necessarily have to see the person you are talking to. I felt that with
vitiligo this could be a benefit. I was in a situation once where we turned
out the lights in a crowded room and in candlelight discussed sensitive
topics. I noticed that in the room, with the lights down low, people were
more willing to open up and express themselves, than when the lights were on
and everyone could see them talk. Back then I used to think of myself as shy,
when the lights went out I felt it was easier to express my opinion.
I felt that the same rule
could apply with vitiligo. Without seeing the person you are talking to, you
are less likely to develop preconceived opinions about the person. You don't
know the sex, race religion, economic status, the car they drive, if they
have vitiligo or if their child or friend has it, you can't even hear their
accent. What you see in your in-box is what you get. As a result VSIG
has become a tremendous success. People pour their hearts out in an
atmosphere of acceptance. No one wants to be different and email puts
everyone on the same level ground. The only limiting factor is your ability
to use the language and your keyboard. It is like a continuous group therapy
session.
Finally all of the
messages sent to the list are archived. Members of the list can search past posts to the list, to read previous
discussions of anything related to vitiligo. You want to learn about pseudo
catalase, search the archives.
Creating a Mailing List
So I set out to
start a mailing list. All I needed was software and a computer to run it on.
Without a direct connection to the internet or even World Wide Web access
(this was before Netscape) this was not going to be an easy task, but I had
email and I was determined to make it work. I asked at work if I could set it
up on their computers, but was rejected. I started sending email everyday, to
everyone I could think of. I started this on a VAX VT100 mainframe computer
system that was completely text based. I finally found a tool that turned out
to be a huge help.
It was a UseNet filter.
UseNet is an area on the Internet where people post notes, similar to the
bulletin board at your local public library. One big difference is the size
and the frequency of notes added to the board. The UseNet can be accessed by
anyone in the world with Internet access. You can imagine that the ability to
filter out the word "vitiligo" from all of the words posted to the
UseNet daily would be a huge help.
I would get a daily
message with every usage of the word vitiligo. I got lots of junk. People
talking about Michael Jackson, questioning whether he really had vitiligo. I
have since talked to a member of VSIG
who said he met Michael, the Jackson's performed at his high school dance,
where they compared their vitiligo. Other people would talk about pets that
have vitiligo.
Back to my story. Out of the
junk, I would find a name or two of people concerned with vitiligo. I would
send notes to these people. Asking for help. Many thought a mailing list
would be a great idea, but none knew how to go about it. This is how I met John Petrik. John had
a positive attitude and he really fueled my fire.
Then I heard about
National Public Telecomputing Network (NPTN). Kind of like Public Radio, but
with an Internet twist. They offered free Internet access to people in cities
all over the US. I contacted them and finally someone said yes, they could
set me up. It took what seemed to be forever, over a month of negotiating
with different people.
In the process, I was put
in contact with Dr. Bob Zenhausern at St. John's University in New York City.
He was able to set us up immediately. He also had better software than NPTN
so I jumped on the opportunity. Dr. Bob and the system administrator at St.
John's (Paul 'Kary' Karagianis) have been tremendous. They have since set me
up with three other listservs. They also allowed John Petrik to create a
sister list to VSIG, which is the VSIG-Lab
(doctors and health care professionals only).
I guess I felt that all
this work would help me, eventually. I had the need to talk to others about
vitiligo. The more people I talked to the better my chances of finding a
cure. One thing was sure, I couldn't talk to my wife about it. She would just
clam up, she couldn't face it. Just ignore it and it will go away. I am sure
I didn't make it easy for her to talk about, I was very frustrated,
frustrated with the disease and with not being able to talk to her about it.
It wasn't healthy for either of us and it wasn't helping Emily either. I
occasionally had difficulty talking about it, but sending email about it was
easier for me.
It seemed easier to talk
to strangers, thousands of miles away, than to friends. It is a very
emotional disease. Have you noticed that when you meet someone with vitiligo,
you tend not to talk about it. At least that was the case with me. It is
easier for me to talk to people I meet about their vitiligo now. I have
stepped out of my comfort zone so many times now that talking about it is
almost second nature. I start by saying, "My daughter has vitiligo, is
that what you have?" or "You know my daughter has white spots on
her skin, just like yours.". So far I have not had a negative response
and I find most people would like to talk about it.
Let's dump the box out
onto a large table and start working the jigsaw.

Chapter 2
Parents'
Perspective
We had all the
pieces to the jigsaw and as emotional beings we stood staring at the pieces
frozen in panic. Panic because we knew we had to put it all together but not
knowing where to start. We were worried about the future, what it would be
like if we didn't or couldn't get it together. But not knowing where to start
and worrying about the future were not going to help us put this puzzle
together. We had to take the first step. Spread the pieces out on the table
and start turning them right side up.
Our Fear of Vitiligo and Inability to Face
the Problem
I think my fear of
vitiligo was concerning the teenage years. I had a fairly easy teen
life and I wanted Emily to have the same or easier time of it. Susie and I
spent quite a few nights crying ourselves to sleep. I can remember a few
nights when I was shaking and sobbing, that is from a guy who unfortunately
doesn't cry very often (macho-macho man). We were concerned about how others
might treat her. It helps you realize the old saying, "You can't judge a
book by it's cover", is so true. If this disease has done anything it
has helped us see others in a different and more compassionate light.
A pressing problem was
the way the other children treated her on the playground and at school. We
have been lucky in that we are in a very small school and have stayed there
for all of Emily's schooling. My wife, Susan, shared a brochure published by
the American Academy of Dermatology (AAD) with her teachers. It explained
about vitiligo and that it was not contagious. Now Emily very rarely gets
asked or teased about her vitiligo.
Susie’s Thoughts on Emily's Vitiligo
I guess I have dealt
with writing this section of the book for you much like I dealt with the fact
that my daughter Emily had a condition, situation, affliction, disease I
don't know what to call it. As long as I don't think or talk about it... it
can't be happening. Well that kind of thinking if you want to call it that
can lead to problems. OK so here I have this perfectly wonderful life, three
kids, a sweet and supportive husband and I'm finishing up my last bit of
schooling on my way to a big Bachelor of Arts degree. When all of the sudden
one spring day my sweet beautiful Emily gets these two little white spots on
the tops of her feet. I always thought they looked like someone spilled a
little milk on her and where the liquid hit is where the mark was left...
funny huh... Anyway I take her to a local dermatologist due to a mild concern
about it on my part. He takes one look at it and says it looks like vitiligo.
At this point my mind is racing to find where I've heard that word before. He
says you know... the disease(?) Michael Jackson has. Then it hits me that's
where I've heard it. Holy cow I'm thinking... a disease that turned a black
man white... my daughter has that. Inside I'm freaking but I calmly
ask him what can we do about it. Well at this point he says simply not much
but here is a brochure
that explains the condition and some treatments that are available. So I
thank him for what I now will call the brochure from hell because I think
reading those few pages on vitiligo absolutely scared me to death. Words
like, "while it is not a physically debilitating condition the social
stigma of the disease could prove very difficult, counseling should be
considered, if it progresses to such an extent there is treatment to get rid
of all the pigment bla bla bla".
Well honestly I think that is the
point when I first started shutting down. I was in a major state of denial as
to what was happening to Emily. Fall came and school started for the kids and
me. There was not much time spent at the beach or sunning ourselves. While I
noticed that more and more white spots were appearing on Emily I just wasn't
getting to worked up about it, I think, I was in the, this isn't happening
mode. The holidays came and went and school started again but for me it was a
different story. I was taking 15 credits just to see if I could handle the
load for a possible future in law school and also so I could then graduate in
May. The semester was busy. Looking back, I don't even know how I did it
except that my Eric basically took over when homework called, which was
always.
Again... we were not beaching it
as it was still cool and I was so busy that I don't even remember thinking
much about Emily's condition. Then in May it hit me like a ton of bricks. I
did graduate, the weather warmed up and we were out in the sun. All of the
sudden Emily's body got tanned except for the spots that now to me seemed to
have a mind of their own and were spreading everywhere. I guess the
contrast between her tanned skin and the spots really made things show up. At
this point, I could not deny it anymore and I was miserable about it. Every
time though, that I even thought about talking about it to Eric I would get
choked up. I did not want to cry, I did not want to be upset so I would just
say nothing. Some of my friends provided shoulders for me to cry on, but a
lot of the times, to comfort me, things like "well at least it's not a
life threatening disease" were said in hopes of easing my distress.
There was a part of me screaming inside that, "life threatening or not
this is my beautiful girl and why should she have to deal with
this" and, "if it was your beautiful girl/boy how would you
feel?" I mean here I'm thinking how horrible I felt as a teenager
because I had zits on my chest and how I went to great lengths to hide them
and I have a daughter that might have great big white splotches on her
hands, neck, god forbid her face. How in the heck can she hide that! Needless
to say I should have shared these thoughts then and I probably would have
gotten through this so much easier and been a much bigger help to my husband
in his quest to search for a cure/reason for this disease. As Eric spent
hours upon hours researching and researching I completely ignored what he was
doing. I guess it was just what I had to do for me at that time. I remember
vaguely that somehow I finally got to the point where I just cried like a
baby to him about the whole-blessed situation, which is my mode. Store
up feelings inside until they explode. And he was finally able to share
with me all the findings of his research and he could discuss it with me
without me freaking out, well sort of. You see, there is still a part of me
that blames my last term of school on Emily's spread of vitiligo.
We learned that stress plays a
part. During that four months things were pretty crazy and quite stressful. I
was very unavailable to my children While Eric did pick up the slack of my
absence I can never stop wondering if life hadn't been so crazy then would
things have turned out different. Anyway I probably beat myself up about that
for now. But you said to put it down on paper so here it is.
Denial is a large river in Egypt.
Unknown Author
After reading that
section you may wish that Susie had written the entire book, she is a
passionate lady and that is part of her beauty. Back to the world according
to Eric. Susie has expressed well that, vitiligo is very much a mental
disease as well as a physical disease. Before you can attempt to get rid of
the physical plaque, you have to be prepared mentally for the challenge. I
don't know if this will help but, I have listed the good that has come of
Emily's vitiligo here (I suggest that you try this exercise).
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We have started eating healthier.
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I am more compassionate to
others. My circle of compassion has expanded.
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VSIG
was started and has touched many lives.
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We started a local chapter of EarthSave International in Cocoa Beach.
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We have simplified our lives.
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I wrote a book and created a web
page.
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I have been invited to speak to
different groups. I even spoke at an "Alliance for Holistic
Healing" meeting. If you had told me years ago that I would be
speaking to them about preventative medicine, I would have thought you were
crazy.
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I have met some wonderful,
famous doctors and health practitioners (John McDougall, Neal Barnard, Michael
Klapper, Lee
Hitchcox).
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I have even been reacquainted
with old friends who have also been affected by vitiligo.
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We have made friends with other
parents, whose children have vitiligo.
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Spontaneous
Repigmentation
I have read about
spontaneous repigmentation in vitiligo patients. Call it the engineer (read engin-nerd
for those of you married to one) in me, but I have a hard time believing the
spontaneous part of the repigmentation. I believe there must have been some
kind of a lifestyle change or behavior modification that came first, IMHO. I
believe that if it went away something changed that made it go away. The use
of these two words seems to me to be the easy way out. Any case of
spontaneous repigmentation should be cataloged and closely studied. This is
where the cure for vitiligo will come from, not
from studying animal models. Even if it was caused by a hormonal change
as an individual passed through a life change.
I have had a friend joke "so
looks like Emily grew out of it", even though I knew he was joking it
drove me crazy. It is like saying I just grew out of my high cholesterol problem. I think the reason I have problems
with phrases like these is, I may never be able to prove beyond a shadow of a
doubt that Emily did not "just grow out of it" or that it wasn't
spontaneous repigmentation. I can only sympathize with Dr. Dean Ornish, when
he was trying to prove that he could reverse heart disease with lifestyle
changes. Of course Ornish finally did prove that he could reverse heart
disease, so one day I may be able to prove that Emily's repigmentation wasn't
spontaneous. I do believe that lifestyle changes can change the course of
disease, and I believe I have seen this many times in my own family.
A study using techniques
similar to the ones that Dr. Ornish used could easily be performed on
vitiligo patients. Using a control group and a group following the methods I
describe later in this book, nutrition, mind body counseling, natural
psoralen, and support groups. We would take pictures of all the patients. The
control group would go to their dermatologist and follow the standard advice.
At yearly intervals we could see the results, statistically we could compare
the progress made by each group.
Another study would
involve vitiligo affected human skin grown in a laboratory. Using varying
amounts of the vitamins mentioned by Dr. Montes in Vitiligo, Nutritional
Therapy we could test their effect on skin that contained vitiligo. In
this experiment you may need to vary the skin types (darker and lighter,
hairy and not hairy) and vitiligo types (symmetrical, segmental).
It has also occurred to
me that we might use population studies to help understand why a country like
India (8.8%) could have such a high rate of vitiligo, while the United States
(1%), Europe (0.4%) and Russia (0.1%) have comparatively low rates.
We could study this thing
to death but right now there are many people looking for a safe and effective
treatment. It reminds me of the following story told by Denis Burkitt, MD, in
Foods Can Save Your Life by Neal Barnard. Dr. Burkitt had just
finished a speech about colon cancer and its relationship to diverticular
disease and going further its relationship to a lack of dietary fiber. A man
approached him and said
'I understand what you are talking
about, but I'm not going to advise anybody until I understand all the
mechanisms and have double-blind trials, and what have you.' 'Well,' I said,
Diverticular disease is going to take a sixty-year trial, so it'll be your
grandson writing up the last paper. If you were on a pier and your son fell
into the water, I know what you'd do. If you had a life jacket in your hand,
you wouldn't throw it to him. You'd say, "I'm not sure of the specific
gravity of this life jacket, and I don't really know whether it fits my son.
I think I'll go back to the lab. I'll do three more weeks' work on my life
jacket, then I'll come back to the harbor and, if Jimmy's still swimming
around, I'll throw him the life jacket'
There are a lot of vitiligo
patients out there that need a life jacket, unfortunately there aren't any
coast guard approved jackets laying around. Do not despair, there are clues
available to safe treatments that can keep you afloat, they may even get you
back to shore.
You Are Not Alone
One percent (1%) of
the world population is estimated to have vitiligo, that is one person out of
one hundred. That may seem like a large percentage. When I first heard that
number I said, no way, it couldn't be, I thought it had to be a smaller
percentage, I just couldn't remember seeing that many people with vitiligo.
The more you think about it, people use camouflage, cover up with clothing or
just have a minor case of it. I was surprised to find out that a neighbor has
it, two of the guys I work with have it and a close friend has it. I remember
seeing someone with vitiligo once as a child, a friend and I, were at the
local gas station. I asked my friend and he told me very seriously that it
came about because the person spilled gasoline on herself. At the time I
accepted his analysis, now I know better. For a long time I avoided gasoline.
Dr. Leopoldo Montes and
his book Vitiligo, Nutritional Therapy has helped us formulate a
nutritional regime for Emily. In a letter I received from Dr.
Montes on 6-13-95 he told me "Leading vitiligo experts in India, a
country with about 8% of the population suffering from vitiligo, agree that
the nutritional basis for many cases of this condition are real." From
what I understand India is a country with a high percentage of malnourished
people. I have read on VSIG
that in India, young girls that have vitiligo are ostracized. Fortunately in
the US (land of the Barbie doll) it is not currently that bad, but the outer
image is still very important to many. We may not ostracize the person openly
and publicly as in India, we do it subtly. Where people are not accepted into
the in group, for whatever reason. I do believe we are becoming a more
open and accepting society in general, it is just in less educated pockets
that you might see this kind of thinking. Later in this book I will describe
in detail the nutritional approach we follow.
Looser, looser, double looser, as if, whatever, get the picture,
duh!
-My children, talking to me, totally, for sure.
For now let's look at a
few posts from VSIG on the subject of India and Vitiligo. I have included
them here to give you an example of some of the variety of information you
will read about on VSIG. They also allude to the strategy that we have been
successful with.
Message Number 1 of 3:
Subject: [VITILIGO] Cultural attitudes
This is the Vitiligo Support and Information Group (VSIG)
Hi all,
I've been sitting here musing.
It's a glorious summer day, I'm wearing a sleeveless top, which shows off
several of my patches to their best advantage, and long trousers. Why the
trousers? Well, for one thing I feel more comfortable in them, but
specifically today - well, to be frank, I didn't have time to shave my legs
this morning. This got me thinking - why don't I mind showing my patches, but
I'm shy about body hair? I've got a theory on that: does anyone remember some
of the rather cruel jokes that used to make the rounds about Germanic
(German, Swedish etc.) girls' underarm hair? I walked straight into that when
I first came to England as a happily hairy 20-year-old Swiss girl. I've been
here ever since, give or take a couple of years, and guess what? I've gone
through the full range of hair-removing equipment. So it's not as though I'm
insensitive to others' opinion of my appearance...
And all that got me wondering, has
anybody done any research on attitudes to vitiligo (by both people who have
it and the societies they live in) in different cultures/countries? In
particular, in cultures which are basically of Northern European extraction?
Are for example Swedes, who seem to have a pretty relaxed attitude to their
bodies in general, less bothered about it? Or is the issue one of conformity,
and whether one society tolerates "deviance from the norm" more
easily than another? Slightly off-topic, I admit and apologize, but it might
be useful to think these things over to get to the bottom of what it actually
is that bothers us about our vitiligo. Any opinions?
Message Number 2 of 3:
Subject: Re: [VITILIGO] Cultural attitudes
This is the Vitiligo Support and Information Group (VSIG)
Hi Peps I remember reading once
that Gandhi said vitiligo caused a lot of suffering in India because people
often confused it with leprosy. Those who had vitiligo were shunned, don't
know if it's still the same today. He hoped there would be a cure found soon.
Don't we all?
best wishes
Elizabeth
Message Number 3 of 3:
Subject: Re: [VITILIGO] Cultural attitudes
This is the Vitiligo Support and Information Group (VSIG)
Hi Elizabeth:
Yes, people in rural parts of India (mostly uneducated) still Confuse
Vitiligo with Leprosy and yes they are shunned even today. Especially young
girls who develop this condition during their puberty and teen years in
villages live a terrible life. Most never get married, many rely on their
extended families to take care of them for life. Some day I will post actual
case studies (makes interesting reading) from my grandpa's medical files (he
was a Dr. of traditional Indian medicine called 'Ayurveda', practiced for 45 years
and passed away in 1981).
By the way, for the benefit of
diet advocates on this list, my grandpa treated a lot of Vitiligo Patients
during his medical career and he always put them on special diet for at least
six weeks and special purgatives for one week before treating them with
"Bavachi" extract (Plant Psoralens in natural form) and sunlight.
The special diet was very simple, almost fat free and excluded many food
items like Onions, cheeses, meat, milk/milk products, fried stuff (no oils),
alcohol, tobacco and some hot spices. [Could we now theorize that may be
these foods cause higher intradermal production/accumulation of H2O2 in
Catalase deficient patient?] He always maintained that inadequate sleep and
fatty diet in wrong combination produced vitiligo in genetically predisposed
individuals. This condition was only treatable in some individuals if the
diet and lifestyle were corrected first followed by Psoralen/natural sun
light. Success depended on the age of vitiligo condition (older patches were
difficult to treat) and patient's adherence to this strict regimen. He also
once mentioned that Vitiligo was a "condition" not a
"disease" and was manifestation of different but related causes in
different patients. That is why this treatment was not suitable for some.
(This might explain unsuccessful double blind studies).
Well, I only wrote this (a boring
article) to open up a healthy debate on this subject and may be inviting
subscribers who have already experimented with strict diet regimens to hear their
stories. The worst thing you can do is to eat onions and drink milk (or milk
products) in a single sitting (this makes Pizza with cheese and onions a bad
combination food) and then starve the body of sleep. Anybody with experience
out there?
Regards,
S. Shah, MS
Rigidity of Modern Medicine
Could nutrition
effect health? The food we eat three times a day. I began to read about
doctors who were successful with nutritional therapy or using nutrition
preventatively for a variety of diseases like heart disease, diabetes, cancer
and vitiligo. The problem was none of the local doctors had heard of it. We
had a pediatrician and two dermatologists tell us there was nothing we could
do, ignore it, live with it. They said she was too young for PUVA. Turns out
now that I am glad they said these things. It helped us open our minds to
look for alternatives, to ask questions. We just couldn't accept what they
told us. Our doctors didn't even recommend steroids, which some doctors do
recommend for vitiligo. I am glad we didn't use steroids, but I am not
knocking any parent or vitiligo patient that is using them. If things had
been different in our lives we may have went that direction. I just want to
say that at this point, looking back on our journey, I am glad we didn't have
to make that choice. I have concerns about the drugs that we are asked to use
by our doctors. I am concerned about steroids and their immune suppressing
effect. I might be willing to use it for a short period, but not for a long
term treatment and vitiligo requires a long-term lifestyle change.
My father was dying as I
wrote this book. He had prostate cancer, coronary heart disease, diabetes and
the cancer had moved to his bones and lungs. I had to witness first hand what
happens when you don't practice preventative medicine. It is very painful to
watch, but it is also showing me and I hope my children, the benefits of
living a simpler lifestyle. More in touch with nature, more compassionate. If
you are lucky it may help reverse your vitiligo, I know for certain it will
help in other areas of your life. My Dad was taking a soup of different
drugs, at least seven different drugs from four different doctors. An
interesting side note is that the doctors were giving my father rat poison to
thin his blood. Yet when I asked if it was all right to give him an enzyme
pill to help him digest his food, they became very concerned about the health
implications of giving him these enzymes. I realize the reason that the rat
poison was used and I also realize it was used in minute doses. It is just in
this atmosphere where doctors get frequent flyer miles to prescribe high
blood pressure medicine. Chemical companies make money without consideration
for the damage they do to the environment. The chemicals they make are then
studied for their effects on humans (using animal
models). There seems to be no money available to test the simplest of
herbs, and prevention is barely taught. We live in a very strange time in
medical history.
I am sorry to imply blame
on anyone. I am not interested in blame or in judgment in any way. I do not
blame my Dad for his prostate cancer, just as I don't blame anyone for his or
her vitiligo. All I am saying is that, in my humble opinion, we can have a positive
affect on our health by following some basic preventative guidelines. For
instance in 1996 the American
Cancer Society said "Increase of risk of prostate cancer is
associated with animal fat, red meats and dairy products, suggesting that
saturated fat may be involved." Of course this was to late for my
father, if he had known this 50 years ago, he might have had a chance. My
father was a lively and vibrant 70-year-old, who was stopped, in his tracks by
this disease. I believe that we can use this same preventative information,
to produce an environment that will promote healing, even for vitiligo. Blame
is not part of healing.
"How good it is to be well-fed, healthy, and kind all at the
same time!"
Henry Heimlich, M.D. (invented Heimlich
Maneuver)
In any statistical sample
there will be an outlier, like Winston Churchill or George Burns, don't let
their success stop you from taking positive action today for your own health.
I believe it will help your vitiligo, and I guarantee it will help other
areas of your health and the health of your family. Future generations will
benefit from the changes you make today. These new habits once learned by
your children will be passed on for many generations to come. If you don't
have children, your actions will have a tremendous effect on your friends.
Most people are interested in living a healthier lifestyle, we just need
positive role models to help us along the way. As we change our lifestyles we
become those positive role models. Others realize that if you can do it, they
can too.
You are probably asking,
what changes? What does cancer have to do with vitiligo and saturated fat?
Trust me I will get there, eventually.
Peter Lynch, in his book One
Up On Wall Street, said that the individual investor has a better chance
of making money in the market than the large institutional investors. He
reasoned that the individual was not encumbered by the rules that the
institutions were under. They could buy as little or as much of any stock in
any sector that they had funds to invest. In the same way, I believe
individuals have a better chance of healing themselves or their loved ones,
of a chronic disease like vitiligo, than a doctor does. The doctors are
restricted by the AMA and the FDA as to which drugs they can use to cure
someone. A doctor may not see it this way, these organizations have been put
in place to standardize and test available treatments. Doctors must also be
concerned about litigation. There are financial incentives for doctors to
prescribe certain drugs. Medical insurance companies discourage services that
are outside of the standard. The problem is that instead of being about
healing, it has become a moneymaking juggernaut. Often times the high ideals required
for healing are not always the same ones required for making money. In the
current environment if your doctor were interested in trying some kind of
"mind body" approach to healing, other doctors would in my opinion,
ridicule them for being unscientific. In the current environment they can't
even consider herbs or vitamins. Medical practitioners must feel trapped
within this double blind system, at least when they deal with chronic
disease. Money and fear double blind the system.
I actually feel sorry for
the dermatologist that said there was nothing that we could do. He had worked
himself into a belief that it was his way or the highway. It was his belief
that the alternative health care professions don't offer anything. He must
have felt that the millions of people who spend their money on alternatives
are just wasting their money. When he told us to go home and just live with
it, I wonder if he really believed that he had earned the fee he charged.
There is a wisdom in the large group of people choosing alternative
health care, and their wisdom should not be discounted.
An unexpected feeling is
gratitude, I am actually grateful for the unbending belief of modern
medicine. This rigid belief that their way is the only way, helped wake me up.
It made me realize that there is never just one way. It helped me to search
for a way that would work in our family.
We had taken the first
step, in our case the parents had to heal before the child. We had to face
the problem and we were now ready to do so. Then we could take the small
steps required to solve any puzzle. This took a long time but it was the
foundation of our future work.

Chapter 3
Lifestyle
Next step in puzzle
solving was to find the pieces with the straight edges. I like to work the border
first. This gives me a frame to work in. In this regard our treatment was to
rearrange our lifestyle. We brought our lifestyle into alignment with healthy
living. We changed our food choices and simplified our lives.
Why Have We Done
This?
Emily's vitiligo
made us reevaluate our entire lives. Anytime the conversation about health
came up and it is surprising how often this happens, we listened. We did a
lot of listening and reading. So I started researching the disease and health
in general. At the time I had a cholesterol level
of 242 (2 points away from the average for a heart attack victim, 244) and I
was experimenting with natural ways to reduce my cholesterol.
My father had adult onset diabetes, which he controlled for years with a pill
and had just started injecting insulin a few years earlier. My blood sugar
level had just crossed the threshold into the high range. So there were a lot
of good reasons to start studying and changing. I could accept that these
things were my inherited traits, which I could do nothing about, or I could
do something about them. I chose the high road.
Loyalty to a petrified opinion never broke a chain or freed a
human soul.
Mark Twain
Dr.'s didn't have much to
offer Emily in the way of a cure and in fact what they did offer had the
potential to screw up her liver. We went to the local library and read the Physicians
Desk Reference concerning the pharmaceutical grade psoralens one dermatologist
recommended, it didn't give us a warm feeling. Most doctors said we shouldn't
do anything until she was 12 years old. Their PUVA treatment didn't exactly
offer me much hope. After reading the next quote (Klaus, S. and Lerner, A.
B., Vitiligo. Journal of the American Academy of Dermatologists, 5:997-1000,
1984) you may see why;
A combination of an orally
ingested drug (psoralens) and the exposure to long-wave ultraviolet light
(PUVA) has become a popular form of therapy. Although this treatment may
improve the appearance of a patient it rarely induces total repigmentation.
Repigmenting therapy often takes several years and requires a tremendous
expenditure of time by both the physician and the patient. The basic defect
that led to the destruction of the pigment cells is not corrected. Because of
the disappointing results patients are often rebuffed or advised to ignore
the white patches or to cover them with cosmetics.
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