Emily’s Vitiligo- part 3
You Are Not Alone (with vitiligo)
One percent (1%) of the world population is estimated to have vitiligo, which 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.
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
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
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?
Message Number 3 of 3:
Subject: Re: [VITILIGO] Cultural attitudes
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. Someday 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?
S. Shah, MS
Rigidity of Modern Medicine and vitiligo
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 firsthand 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 effect 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 too 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 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.