Vitiligo is a disorder in which progressive patches of skin, hair . . . → Read More: Romanian Community Provides Insight Into Genetic Factors Associated With Vitiligo]]> ScienceDaily (Mar. 17, 2008) ”An isolated, inbred Romanian community has a higher than average frequency of the skin disease vitiligo and other autoimmune diseases, suggesting a genetic variation that may indicate susceptibility to the condition in a broader population, according to a new report.

Vitiligo is a disorder in which progressive patches of skin, hair and mucous membranes lose color due to a decrease in the number of pigment-producing cells known as melanocytes, according to background information in the article. Vitiligo affects about 0.38 percent of whites and occurs with similar frequency in populations worldwide. Researchers are attempting to identify the genes responsible for susceptibility to vitiligo, in part to identify pathways through which effective treatments might be developed.

Stanca A. Birlea, M.D., Ph.D., and colleagues at the University of Colorado Denver, Aurora, Colo., studied 1,673 residents of a geographically isolated community in the mountains of northern Romania between 2001 and 2006. The researchers identified patients with vitiligo and obtained information on demographic data, genealogies, occurrence of other diseases and family structure. The skin of patients with vitiligo and their relatives was examined.

During the study, researchers identified and examined 51 patients with vitiligo. “The 2.9 percent frequency of vitiligo in the study community is 19.3 times its 0.15 percent frequency in the five surrounding villages, 7.5 times that among whites on the island of Bornholm, 5.7 times that among individuals in Calcutta, India and 22.5 times that among Han Chinese in Shaanxi Province, China, the only other populations for which empirically determined prevalence estimates have been published,” the authors write. Rates of other autoimmune diseases, including thyroid disease, adult-onset type 1 diabetes and rheumatoid arthritis, were also elevated in the community.

However, the average age at which symptoms of vitiligo first developed was 36.5 years, significantly older than the average age of onset among white individuals (24.2 years). Analysis indicated that this unusual factor most likely was not genetic. “Whereas disease susceptibility seems to involve a major genetic component, actual onset of vitiligo in genetically susceptible individuals seems to require exposure to environmental triggers,” the authors write.

The community’s isolation may make it easier for researchers to identify mutated genes that increase risk for vitiligo in this population, they conclude. “While this gene variant is of particular importance in this isolated special population, it likely is also involved in disease susceptibility in the broader white population and, thus, is of broader importance,” they write.

Journal reference: Arch Dermatol. 2008;144[3]:310-316.

This study was supported by grants from the National Institutes of Health and a grant from the American Skin Association.

Adapted from materials provided by JAMA and Archives Journals.

In this soon to be published study in the journal “Dermatology”, noncultured autologous melanocytes and keratinocytes were grafted in a hyaluronic-acid-enriched suspension on superficially laser-abraded vitiligo lesions in 40 patients . . . → Read More: Over 70% Repigmentation Achieved In Patients With Stable Vitiligo]]> A high percentage of repigmentation is achieved in patients with stable vitiligo by noncultured epidermal cell transplantation, according to both subjective and objective evaluation methods.

In this soon to be published study in the journal “Dermatology”, noncultured autologous melanocytes and keratinocytes were grafted in a hyaluronic-acid-enriched suspension on superficially laser-abraded vitiligo lesions in 40 patients with refractory stable vitiligo.

The repigmentation was evaluated 3-12 months after grafting using a digital image analysis system. Furthermore, the treatment was evaluated from the patients’ point of view with the Dermatology Life Quality Index and a global assessment.

The mean percentage of repigmentation at the last follow-up visit was 72%; a repigmentation of more than 70% was observed in 62% of the patients. The best results were achieved in the neck and presternal regions.

All patients were satisfied with the achieved results, found it worthwhile to undergo the treatment and would choose to do so again.

About the S. KARGER AG

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The medical community . . . → Read More: Vitiligo: A State of Mind]]> I received a comment today from a woman who thinks that she might have vitiligo and her words made me take pause to think. She spoke of having a few autoimmune diseases in her family and about the research she has done to try and find a cure for her own ailments.

The medical community may not agree with patients searching for a cure for their own condition since they have little or no medical training as to the specific complexities of the human body, but from a psychological standpoint, I think it’s the greatest emotional healer. It’s how they get their power back.

Hearing a diagnosis for some physical ailment is in itself a hard pill to swallow (pardon the pun), but the feeling of helplessness that follows, the total dependency upon the medical community to ‘fix’ the problem, and living with the physical effects of the illness, can leave one emotionally drained.

If you think about it, no matter what situation you face, be it a breakup, problems in the workplace, or health issues, your perception of the situation and how you live through it will directly influence your emotional standing. It’s normal to feel overwhelmed, but it’s imperative to your overall health.

Vitiligo is as much a mental disease as it is physical. As a matter of fact, if it weren’t for the obvious white patches on the skin, one would never know that they had a problem. This skin disorder brings no physical discomfort, but it almost guarantees social discomfort because your skin is not a uniform color.

So, how do you live with this? Well, through all of the communications I’ve had with people who have vitiligo, I can see 3 categories that they fit in: the “I’m fine with how I look and don’t care what others think” group, the “I can’t face another day living with this” group, and most people are in the “I don’t like having this skin disorder and I’m not getting the help I need from doctors, so I’m going to help myself!”

The first and third categories are empowered, but if you find that you are in the second, please try to find a way to change your perception so that you can feel better about yourself and live a happy life.

Easier said than done, I know. But I think even the smallest act of taking supplements daily which may help the vitiligo, going for a walk each day, or perhaps journaling your feelings daily, will help. Routines can bring on a sense of pride, this leads to raised self-esteem, which then brings you to a place of having self-worth. And when you have self-worth, not much can stand in your way of being content.

Here was a part of the body’s natural immune system . . . → Read More: Vitiligo cure through RNAi]]> I was just watching a show at the Nova site about the discovery of RNAi (the ‘i’ stands for interference) in cells. It’s best that you go read what the experts wrote about it, but here is a short quote from the site about it:

Here was a part of the body’s natural immune system that, it seemed, might be enlisted to fight almost every disease imaginable; brain disorders like Huntington’s and Alzheimer’s, deadly viral infections, cancer, every condition in which “silencing” rogue genes might stop disease onset or progression.

Since vitiligo is considered an autoimmune disease, perhaps our cure can be found through the RNAi discovery.

Does that hurt?

Did you get burned in a . . . → Read More: Vitiligo: Emotional Not Physical Suffering]]> Mysterious Disease, Vitiligo, Causes Emotional ”Not Physical” Pain for Sufferers:

Published October 2007
When kids notice Maggie Hargrow, she knows by the shocked looks on their faces they are curious about her ”maybe even a bit scared. The braver kids always blurt out the same questions:

Does that hurt?

Did you get burned in a fire?

Thats because Hargrow, 66, of Avondale, has vitiligo, a relatively common condition that causes the skin to lose its pigmentation. Although scientists believe the condition is genetic, there is no cure for vitiligo. It most often occurs in people with autoimmune diseases and first appears near the mouth, eyes, nose and joints.

Hargrows vitiligo started in 1975 with a single white spot at the corner of her right eye. Over the next 25 years, the condition has slowly crawled across her face and other parts of her body”including her scalp, hands, feet, arms and legs.

Im thankful that I can legitimately answer no to the kids questions, but this disease has caused me emotional pain. People have been very cruel to me over the years, Hargrow says. I cant go in the grocery store or even walk down the street without people staring at me or assuming I have some horrible, contagious disease. They sometimes shrink with disgust.

No matter how resilient a person tries to be, she says, eventually those looks and comments hurt.
For years, Hargrow says she has been embarrassed by her condition and hesitated to go out in public.

She didnt share her feelings with her family” even though they continued to show her love and support. She became somewhat reclusive, her overall health declining as a result.

UC dermatological researcher Raymond Boissy, PhD, is working with the National Vitiligo Foundation to break down barriers for people with vitiligo as well as understand the genetic causes for the disease.

Boissy is organizing a national conference to be held in Cincinnati Saturday, Oct. 27 to help educate both patients and researchers about vitiligo.

Vitiligo is one of the most prominent non-cancer skin diseases, but the lack of general community awareness about it has resulted in painful stereotypes that make leading a normal life very difficult, explains Boissy, professor of dermatology at UC and president and chairman of the National Vitiligo Foundation.

Only 30 percent of patients will show any progress from the therapies available today, he adds. The foundation exists to help raise awareness of the disease, provide funding for new research and advocate for the rights of people like Maggie.

Hargrow says last years vitiligo conference changed her life.

Before I went to the conference, I felt isolated and cut off from the rest of the world, she recalls. But when I walked in and saw people just like me, it was like that covering of fear and self-loathing had been scraped off.

It gave me the confidence to come out of hiding, and reminded me that each day is one more beautiful day that God has given me to do something with my life. I try to think positively now and do more to conquer my fears.

Hargrow says in addition to registering people for this years conference, she’ll be giving every attendee she sees a big smile and hug.

Unlike vitiligo, smiles and positive feelings are contagious. I cant wait to spread them to other people like me, she laughs.

Hargrow and other vitiligo patients from across the United States will share their stories during the patient-support group session at the conference.

Pre-conference attendees can take a tour of Boissy UC vitiligo research lab at 10 a.m. Group sessions, including separate tracks

for patients and scientists, begin at 1 p.m.

Patients and their families will hear about ways of maximizing dermatology visits and strategies for living better with vitiligo, as well as about current and emerging light and drug therapies for the condition.

Following the group session, Lee Thomas, a Michigan TV anchor who has vitiligo, will give a keynote address during the National Vitiligo Foundations Awards Banquet about his personal experiences with turning white.

The foundation also will be awarding $30,000 in scientific grants.

Another Perspective:  Kids and Vitiligo
Although about 40 percent of all people with vitiligo are over age 15 at diagnosis, some people literally will live their entire lives with the condition.

Miller Beyer, 9, of Mason, was just four years old when his mother noticed small white spots developing on his hands and knees.

We’ve always told Miller that his vitiligo is just one of the things that makes him special, but its tough for a kid to be different, says Bess Beyer, his mother. Fortunately, most of his spots are in places that aren’t that noticeable, which helps him deal with the condition.

Last year, Millers mom took him to the vitiligo conference so he could see other people like him.
He felt like he was the only person who had this problem, so the conference was a big confidence booster, she says.

Now in the fourth grade, Miller is pretty matter-of-fact about his condition.

People always ask: Why is your skin so white? Whats on your skin? I just tell them my skin doesn’t produce color, and its not contagious, he says. Most people are cool with it after that.

Next year, the National Vitiligo Foundation hopes to host Camp Discovery, a retreat for kids and friends of kids with vitiligo to help foster understanding about the disease.

I’ve been experimenting with taking B12, Folic acid, and a multivitamin, to help repigment because this combination worked for other people. One factor . . . → Read More: Vitiligo, Celiac Connection?]]> In September, a lady named Tori left a comment about her experience with autoimmune diseases and some research she had done on celiac disease which resulted in a possible link to vitiligo.

I’ve been experimenting with taking B12, Folic acid, and a multivitamin, to help repigment because this combination worked for other people. One factor that I did not include was the changes made to their diets.

After pondering a while as to why i was not repigmenting, I began to wonder, “if my body was not naturally absorbing the B12, why would it do so just because I was taking a high dose?” This lead me to wonder why I wasn’t absorbing the B12. Then I remembered a great story I read about a little girl named Emily whose family completely changed their diet and lifestyle to cure their daughter of vitiligo. It worked because Emily had an intolerance to gluten and once they cleared that from her diet, she was better.

I also have hypothyroidism, and given the fact that both vitiligo and hypothyroidism patients are usually B12 deficient, I think I can safely say that if my body were able to properly absorb the B12, I would see a great improvement in my health.

Recent evidence suggests that the association between autoimmune
thyroid diseases and celiac disease is quite similar
to that between AIDDM and celiac disease. In earlier series,
approximately 5% of patients with celiac disease have been
found to suffer from hyper- or hypothyroidism, even though
the percentages are highly variable (Table 4). No clear difference
in the occurrence of hypothyroidism vs. hyperthyroidism
was seen. Again, it should be noted that clinically
silent celiac cases probably remained mostly undetected.
Moreover, thyroid disorders had not been rigorously sought
in patients with celiac disease; hence subclinical cases were
not found.
Previous to the wide application of serological screening
tests, only few studies reported the prevalence of celiac disease
in patients with autoimmune thyroid diseases. Siurala
et al. (105) reported small-intestine mucosal biopsy findings
in 32 patients with hyperthyroidism, but none showed villous
atrophy. The same group (106) found six patients with
concomitant spontaneous hypothyroidism or autoimmune
thyroiditis and small-intestinal villous atrophy. However,
the diagnosis of celiac disease remained inconclusive, as
there was no definite response to a gluten-free diet. A few
years later, Kuitunen et al. (107) performed small-bowel biopsies
on 32 children with autoimmune thyroid disease; two
(6%) of them were found to have small-bowel villous atrophy
compatible with celiac disease.
An accurate perception as to the presence or the lack of
association can be obtained by screening all patients with
autoimmune thyroid conditions for celiac disease, and vice
versa, by rigorously searching for even subclinical autoimmune
thyroid conditions in celiac disease. Such studies
should preferably be controlled. Over the past few years a
number of prospective studies attempting to clarify the association between thyroid and celiac diseases have been
published.

Maybe I am just grasping at straws looking for connection that may lead to a cure.

Changing over to a gluten-free diet is going to be difficult and a bit expensive. The good news is that my grocery store has an aisle dedicated to gluten-free products. I’m off to shop now!
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** note: I haven’t verified the information but, nevertheless, it’s a good read.

Putting our bodies on display

For more than 200 years . . . → Read More: What Did Thomas Jefferson Think About Vitiligo?]]> I never really thought about how vitiligo has been viewed throughout history, until I came across a website that was a cornucopia of historical information. Here is an excerpt from the site:

** note: I haven’t verified the information but, nevertheless, it’s a good read.

Putting our bodies on display

For more than 200 years natural philosophers, scientists and showmen have exhibited the bodies of African Americans with white or gradually whitening skin in taverns, dime museums, and circus sideshows. The term White Negro has served to describe individuals born with albinism as well as those who have vitiligo . . . From the book, The White African American Body by Charles D. Martin.

Unlike the negative feelings people have regarding albinism and vitiligo today, for hundreds of years Europeans marveled at us and called us wonderful.Neat, huh? Although we were put on public display, people regarded us as objects of great wonder and beauty. They looked at us somewhat as one would look at a true living unicorn, or an earth-bound angel. We were highly praised, and apart from being property on public display, treated with respect.

The English fairs of the 1700s were the most prolific at exhibiting the body of the White Negro. Everywhere paintings, etchings, wood engravings, prints and reproductions of all kinds were used to bring throngs of spectators to view the spectacle. Souvenir coins were made with the image of a woman known as Mrs. Newsham, the albino negress. Engravings of George Alexander, The Spotted Boy were made for exhibitions. The European at this time did not consider these people to be of mixed race. There was no confusion. These were Africans: pure and simple.

Several people became famous for either being put on display or for putting themselves on display. The name Henry Moss was as familiar in some parts at the time as Thomas Jefferson, or John Adams. Moss exhibited himself in the 1790s around Philadelphia while giving a history on his changing body. Even George Washington paid a quarter to see this phenomenon. Mind you. A quarter was the usual cost of admission to enter an entire museum. Mr. Moss could get away with charging this much just to see himself alone. Marina Sabrina was one of many children exhibited in a peculiar fashion by todays standards. She, and others like George Alexander were billed with such names as Piebald Girl or Leopard Boy. They were often depicted as children of nature, sitting on turtles, holding birds and smiling serenely as if they held celestial secrets.

There were even concerts put on by a set of brothers called The Four Snow White Negro Boys. Whose parents were said to be black as jet.

To read more, click here to be transported to the site

RENE’ TURNER on 07.19.07 at 1:52 am I just started B-12 shots for another medical condition and found that it is repigmenting the vitiligo on my body, especially around my lips and eyes in a matter of . . . → Read More: My vitiligo reacted to B12 shots as quick as lightning!]]> In case you didn’t read this comment on one of my earlier blogs, I thought it worth reprinting.

RENE’ TURNER on 07.19.07 at 1:52 am
I just started B-12 shots for another medical condition and found that it is repigmenting the vitiligo on my body, especially around my lips and eyes in a matter of days. I have used Paba & L-PHENALALALYNE, the piss w/ the light box, grafts etc.these shots have reacted to my body as quick as lightning!!!!!