Emily's vitiligo
By Eric Fricker

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

COPYRIGHT

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).

	We have started eating healthier.
	I am more compassionate to others. My circle of compassion has expanded.
	VSIG was started and has touched many lives.
	We started a local chapter of EarthSave International in Cocoa Beach.
	We have simplified our lives.
	I wrote a book and created a web page.
	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.
	I have met some wonderful, famous doctors and health practitioners (John McDougall, Neal Barnard, Michael Klapper, Lee Hitchcox).
	I have even been reacquainted with old friends who have also been affected by vitiligo.
	We have made friends with other parents, whose children have vitiligo.

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.

Emily's vitiligo By Eric Fricker