Emily’s Vitiligo- part 1
Years ago I came across this story about a family who changed their lifestyle in an effort to help their daughter who had vitiligo. It worked!
As I went back to reference the site to answer a question emailed to me, it was gone; however, through the magic of the internet and the wayback machine, I was able to retrieve a full copy…all 93 pages!
We talk a lot about vitamins, diet changes, and different techniques to heal vitiligo and repigment our skin, so I thought it’d be a great idea to reprint their whole story here.
By Eric Fricker
A low technology approach to vitiligo, published on the information super highway.
First Revision, Copyright © 1997 by Eric Fricker
Second Revision, Copyright © June 1998 by Eric Fricker
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.
This book is dedicated to my wife Susan and our children Kyle, Emily and Katie, as well as the many people suffering from vitiligo.
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.
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.
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 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.