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 its 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 is 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 we can 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 (of vitiligo). 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.
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.
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.