The Complete Guide to Vitiligo Corner 2007

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A comprehensive guide to the articles and comments on our vitiligo website during 2007.

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ARTICLES AND COMMENTS FROM 2007
WRITTEN AND COMPILED BY NATHALIE PELLETIER

The Complete Guide to Vitiligo Corner for 2007

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The Complete Guide to Vitiligo Corner for 2007

Table of Contents
Introduction .............................................................................................................................................................. - 4 What is Vitiligo? .................................................................................................................................................... - 4 What Causes Vitiligo? ............................................................................................................................................ - 5 Vitiligo Symptoms ................................................................................................................................................. - 6 Life With Vitiligo .................................................................................................................................................... - 7 Vitiligo Corner Posts 2007 ......................................................................................................................................... - 9 Scientists Implicate Gene in Vitiligo ....................................................................................................................... - 9 Rare Case of Rottweiler with Vitiligo ................................................................................................................... - 12 What Did Thomas Jefferson Think About Vitiligo? ............................................................................................... - 18 Narrowband UV-B Treatment More Effective for Vitiligo than Psoralen UV-A Therapy ........................................ - 20 Pigment Cell Research August 2007..................................................................................................................... - 23 An Idea That’s Working ....................................................................................................................................... - 27 Vitiligo: A State of Mind....................................................................................................................................... - 35 Vitiligo-Celiac Connection? .................................................................................................................................. - 38 International Vitiligo Organizations ......................................................................................................................... - 45 About the Author ................................................................................................................................................... - 46 -

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The Complete Guide to Vitiligo Corner for 2007

Introduction
What is Vitiligo?
Vitiligo is quite a common skin disease which affects at least 2 people in every 100 in countries throughout the world. Anyone, male or female, irrespective of skin color or ethnic origin can develop the condition. Vitiligo causes the skin, and sometimes the hair, to turn white in patches. This is because melanocytes, the cells which give the skin its color, have either been damaged or destroyed. The disease can spread, rapidly or slowly, to cover the entire body surface (universal vitiligo) but this is not inevitable. The most common form of vitiligo appears in symmetrical form (generalized vitiligo) affecting both sides of the body. In some cases only one half of the body is affected (segmental vitiligo) and this type has limited progression and is more difficult to treat. Vitiligo can begin at any age, though about fifty percent of people develop it before the age of twenty. You cannot catch vitiligo. It is not infectious. Although there are no physical symptoms apart from sunburn in the white patches if they are not protected from the sun, it can cause severe psychological distress, especially when the face, neck, hands and genitals are affected. Although the disease is more noticeable on dark or tanned skin the degree of distress is not necessarily linked to skin color or to the extent of the disease. However, people with dark skin from certain ethnic groups who develop vitiligo may feel particularly stigmatized and fear a loss of identity should the disease become widespread. The course of vitiligo is unpredictable. Some people may not notice a change in their condition for many years, while for others it can spread quite rapidly. In some cases the white patches can spontaneously repigment, particularly in children, though it is rare for the disease to resolve completely without treatment. http://www.vitiligosociety.org.uk -4Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007

What Causes Vitiligo?
We have some idea of what is happening in vitiligo but are less clear about why it is happening. We know that pigment cells are not functioning in the white patches although some of them do survive both in the skin and also in the hair follicles in the white patches. Many theories exist to explain the loss of pigment; the most popular is the autoimmune theory which means that the body’s own immune system is attacking the pigment cells. It has also been recently established that genes play an important role in predisposing some people to vitiligo, especially those who have other autoimmune diseases, in particular thyroid disease, or who have family members who suffer from vitiligo or these diseases. This discovery strengthens the autoimmune theory. Other theories which have been proposed include the neuronal theory which suggests that the nerves in the skin are implicated in the damage to pigment cells and the oxidative stress theory based on the breakdown of anti-oxidant defenses in the skin or in the pigment cell itself. In addition, high levels of hydrogen peroxide which is toxic to pigment cells have been found in the skin of people with vitiligo. It is also recognized that environmental factors such as psychological stress, hormonal changes including puberty and childbirth, trauma to the skin, and even exposure to certain chemicals may trigger the disease and could play an important role in its development and progression. http://www.vitiligosociety.org.uk

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The Complete Guide to Vitiligo Corner for 2007

Vitiligo Symptoms
The main sign of vitiligo is pigment loss that produces milky-white patches (depigmentation) on your skin. Other less common signs may include: * Premature whitening or graying of the hair on your scalp, eyelashes, eyebrows or beard * Loss of color in the tissues that line the inside of your mouth (mucous membranes) * Loss or change in color of the inner layer of your eye (retina) Although any part of your body may be affected by vitiligo, depigmentation usually develops first on sun-exposed areas of your skin, such as your hands, feet, arms, face and lips. Although it can start at any age, vitiligo often first appears between the ages of 20 and 30. Vitiligo generally appears in one of three patterns: * Focal. Depigmentation is limited to one or a few areas of your body. * Segmental. Loss of skin color occurs on only one side of your body. * Generalized. Pigment loss is widespread across many parts your body. The natural course of vitiligo is difficult to predict. Sometimes the patches stop forming without treatment. In other cases, pigment loss can involve most of the surface of your skin.

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Life With Vitiligo
A diagnosis of vitiligo can seem like a life sentence as the unpredictable course of the disease means no-one can be sure how it will progress and until a cure is found people with vitiligo must learn to live with it. There are, of course, treatments that can improve the condition, and sometimes this improvement can last for many years. But there is always the fear that the white patches may return and spread more widely than before. Most people after they have been diagnosed experience a range of feelings and emotions including shock, denial, anger, fear, guilt, anxiety, isolation, depression and finally acceptance. A lot of people never get to the last stage and many can become overwhelmed by low self esteem and lack of confidence. Some people with vitiligo never really fulfill their potential and many children are teased and bullied with some reported cases of underachievement at school. However, vitiligo need not prevent you from doing what you want in life, once you realize it does not have to take over your life and is only part of who you are. Focusing on your good points and building up your self esteem will help to put vitiligo in perspective. Self confidence, once achieved, should make it easier for you to deal with intrusive staring and rude remarks and go out in public without feeling ashamed or ugly. Not many people can boost their confidence without help. Although support from friends and family is essential you may find a course of counseling helpful. It is not surprising that people stare at the sight of vitiligo because it looks strange and they do not know what it is. They may recoil because they are afraid of catching it. Explaining what it is can help to dispel their fears but you are not obliged to talk about it. You are entitled to choose how much or how little you discuss it, especially with strangers. Be prepared with a few simple explanatory phrases. “It is vitiligo, a condition that affects the pigment cells in my skin. They are not functioning properly or are missing from my skin and that causes these white patches which -7Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 can burn easily in the sun if I do not protect my skin. It is not life-threatening and it is not catching”. Humour is another way of dealing with rude or insensitive remarks. Try to have a few funny remarks up your sleeve to use when the occasion arises. Having vitiligo is not a tragedy although the loss of your skin colour can also appear to threaten your racial identity if you have dark brown or black skin. The colour of your skin is not the only thing that makes you who you are. Family background and upbringing, personality, education, cultural and religious beliefs, the country you live in, are more important in defining you as a person. You could say that having vitiligo is one way to show the stupidity of judging anyone by the colour of their skin. http://www.vitiligosociety.org.uk

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Vitiligo Corner Posts 2007
Scientists Implicate Gene in Vitiligo
5 June 2007 In a study appearing in the March 22 New England Journal of Medicine, scientists supported by the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) have discovered a connection between a specific gene and the inflammatory skin condition vitiligo, as well as a possible host of autoimmune diseases.Vitiligo is a chronic condition in which melanocytes (the cells that make pigment) in the skin are destroyed. As a result, white patches appear on the skin in different parts of the body. Similar patches also appear on both the mucous membranes (tissues that line the inside of the mouth and nose), and perhaps in the retina (inner layer of the eyeball). The hair that grows on areas affected by vitiligo sometimes turns white. The researchers began a search for genes involved in vitiligo almost a decade ago with the help of the Vitiligo Society in the United Kingdom. In the beginning we were looking for multiple family members with vitiligo,• says Richard Spritz, M.D., director of the Human Medical Genetics Program at the University of Colorado at Denver and Health Sciences Center and lead investigator for the study. The researchers sent a questionnaire to members of the society, asking them about their own vitiligo and whether other family members were affected. As part of the questionnaire, they also asked about other autoimmune diseases. What they learned was that vitiligo was very highly associated• with a number of other autoimmune diseases, mostly thyroid disease, but also pernicious anemia, rheumatoid arthritis, psoriasis, lupus, Addison’s disease, and adult-onset autoimmune diabetes.

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The Complete Guide to Vitiligo Corner for 2007 That finding prompted the researchers to study families with multiple affected members and to look for similarities in genes among those who were affected. By searching the genome, they discovered a gene, NALP1, that was key to predisposing people to vitiligo and other autoimmune diseases, particularly autoimmune thyroid disease, says Dr. Spritz. We know that about 20 percent of people with vitiligo also get autoimmune thyroid disease, and this gene may be involved in mediating both of those,• he says. Dr. Spritz says the implications of this finding are exciting. The identified gene controls part of what is called the innate immune system, which is our body’s first defense against infection, he says. When we are attacked by viruses or bacteria, the innate immune system stimulates the inflammatory pathways and calls the rest of the immune system to action. NALP1 is probably a receptor for bacterial or viral signals. We don’t know what these signals are, but now that we know what the gene is, we can use that knowledge to search for the signals that trigger autoimmune disease.• All autoimmune diseases involve the interaction of multiple genes and environmental triggers, • he continues. You are born with your genes, but you are not born with these diseases. Something happens. We don’t know what the triggers are that start these diseases, but if we did, maybe we could avoid them or even block the process. In fact, it may even be possible to actually stop the autoimmune disease, he says. The most immediate application of this research might be for the disease that began the research: vitiligo. Doctors usually treat vitiligo with ultraviolet (UV) light to stimulate skin repigmentation. Scientists also know that there is one medication available (approved for treating rheumatoid arthritis) that blocks an inflammatory pathway thought to be controlled by NALP1. The possibility of combining a drug with UV light to improve vitiligo treatment is intriguing and Dr. Spritz is now interested in finding out more about how the medication might affect people with vitiligo. NIAMS Director Stephen I. Katz, M.D., Ph.D., calls the discovery of the NALP1-autoimmunity connection an important advance in the understanding of autoimmune diseases that collectively affect an estimated 15 million to 25 million - 10 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 Americans. The more we understand about these diseases, including the genes that predispose to them and the environmental factors that trigger them, the closer we come to better treatments and even preventive measures, he says. Additional support for this research was provided by the National Institute of Allergy and Infectious Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the U.K. Vitiligo Society and the National Vitiligo Foundation. The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the Department of Health and Human Services’ National Institutes of Health, is to support research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. For more information about NIAMS, call the information clearinghouse at (301) 495-4484 or (877) 22-NIAMS (free call) or visit the NIAMS Web site at http://www.niams.nih.gov. The National Institutes of Health (NIH) ” The Nation’s Medical Research Agency ” includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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The Complete Guide to Vitiligo Corner for 2007

Rare Case of Rottweiler with Vitiligo
15 June 2007 A rare skin disease called vitiligo is turning his black coat white around his eyes, mouth, body and bottom. “He’s just getting whiter and whiter,” says owner and Grey Lynn veterinary nurse Vanessa Townsend-Paley. “Even his nails that were once black are turning white.” The six-year-old is believed to be the first rottweiler with vitiligo in Australasia. The disease, which also affects humans – most famously singer Michael Jackson – and other animals, attacks the cells that produce skin pigment melanin. When melanin production stops, skin loses its pigmentation and turns white. But doctors don’t know what causes it and have no cure. “Rommel’s the only one in the whole litter of 13 that’s changed colour,” says Ms Townsend-Paley, 32. Vitiligo is genetic but some believe it can be triggered by stress or trauma. Rommel broke his leg six months before the vitiligo surfaced. Ms Townsend-Paley believes the trauma only sped up what was going to happen anyway. She noticed something was wrong when Rommel started losing the pigment around his mouth. The North Shore resident works at Grey Lynn Vetcare. She asked veterinarian Alex Melrose to treat the problem but it didn’t go away. “Then Rommel started to develop white spots on his back, one then more,” Ms Townsend-Paley says. “That’s when we started questioning what was going on.” She combed the internet for more information and after Rommel developed about 30 spots overnight, a biopsy revealed vitiligo. “Everyone was just blown away,” she says. “Then it was like well, what do we do from here?” - 12 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 Dr Melrose suggested she try copper supplements and high doses of vitamins to help restore pigment and regulate the immune system. “But that hasn’t stopped it or slowed it down,” Ms Townsend-Paley says. “You just don’t ever see a case like this. I’ve tried everything. Most people say it’s untreatable. “Rommel’s in perfect health otherwise but now he’s not taking anything. We’re just letting it take its course because nothing’s worked. “It’s just a case of wait and see.”

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The Complete Guide to Vitiligo Corner for 2007

11 Comments
Diesel said: i believe my four year old rottie has it as well, been getting grayer by the day # 16 September 2007 at 2:47 pm kathy federico said: my 5 year old male rottie has started developing this — currently has 8 spots on his body. I was researching the problem and found this site — what did we ever do for information before the internet?# 12 December 2007 at 12:14 pm diesel said: yeah, again, my four year old is literally getting whiter by the day, soon, i think he’ll be a reverse dalmation! when he was one and two years old he had two surgeries for tplo, his knees. so, i think trauma definetly triggers it, not sure what to do to help the pigment??# 12 December 2007 at 3:30 pm White hairs - Page 3 - Doberman Talk Forums said: [...] Posted by KenyaARaineCD See interesting Pic of Rottie w/ vitiligo: Rare Case of Rottweiler With Vitiligo | Vitiligo Yes, that’s pretty much how the Doberman I knew I looked, only this rottie is much worse. It *...+# 7 June 2009 at 9:45 pm

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The Complete Guide to Vitiligo Corner for 2007

Nesta said: Our rottweiler is 1 1/2 years old. We have discovered small (.5-1mm diameter) spots first on Nesta’s nose about a month ago. Once a large spot occurred on the corner of his nose I noticed his gums had turned almost completely pink over the month. Eyelashes on one eye are white and he has a couple of white hair spots on his face. My vet suggested nothing other than biopsy. I see all these ads for human treatment, as I search for rottweiler treatment. Only vitamins for dogs?? Haven’t seen any comments about successful slowing or stopping progression of vitiligo… If you’ve had success, submit what you did.# 19 October 2009 at 9:17 pm nancy said: I too have a 2 year old female Rottweiler that is losing her black color on her nose and her lips. There are patches of pink on her nose and lips. We thought it was a seasonal allergy but its winter here now so that cant be the cause. We recently have changed her dog food to a no grain brand and are hoping that will help. Dont know what else to do???# 2 December 2009 at 3:54 pm Chris Wikle said: My rott had it. It came on after she got hook worms when she was about 6-7 years old. The vet thought it was old age but must not have known. And over the years it just got worse and worse until she looked like a grey ghost. I dont think it affected her health but wow it did change her appearance.# 3 January 2010 at 1:02 pm Lynzee said: My 3 1/2 year old rotti has Vitiligo and he hasn’t had any trauma. We recently got a new puppy, but that was after this had already started. My rotti started out with the pink gums, nose and around the eyes. We saw it progress into - 15 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 his nails turning white and a few spots around his ears and he’s quite spotted grey on the top part of his head. I have read that this does not affect their health at all, but it’s still a concern as to why it happens. I have viewed pictures and saw that some can turn almost all white. I am just wondering how quick your dogs are turning white so I can prepare myself for when this will happen. Its been ongoing now for about 8 months. That’s when we first noticed it. We’ve looked at photos previous to it starting so we can determine all areas of where he is affected, and it’s just insane how quickly it happens. Our vet did tell us to remove all plastics (incl water/food dish) and get stainless steel. Apparently something in the plastics can cause this. We changed it right away and some of this lip black started to come back, but in spots…but that has stopped and the white on his head came in more.# 19 January 2010 at 10:39 am Nathalie Pelletier (author) said: hi lynzee, the good news is that vitiligo isn’t fatal or harmful, so the only thing you have to prepare yourself for is a change of appearance in your dog. nathalie# 19 January 2010 at 10:45 am

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The Complete Guide to Vitiligo Corner for 2007 Brooke said: This is definately what my 6 yr old female rottweiler has. Shes had alot of different trauma in her life. she had parvo as a puppie and we got her at 5 mths old she had already been beaten soo many times and had brocken her front paw which never was treated. I first noticed her eye lashes went white..i thought it was aging…then she started to get patched RANDOMLY all over her. and now her nose had lost all its pigment. Im glad that i finally found some answers….not the most serious answer tho….which is … Is Vitiligo in my dog harmful to my 2 yr old son???? Anyone that has any suggestions or answers for me…i would be greatly appreciated. Dora our rotti seems to be in good health otherwise…a little more additude and less paitences with things….but she does seem to be the same dog we have always loved. However we can not afford to take her to a vet. Nor does it seem that any treatments work. We can live with her appreance….but i couldn’t live with myself if she was “diseased” and passed it to my son. I thought she may have a parasite…or something infectious. Thanks sincerly Brooke, Dora and family # 22 April 2010 at 10:05 am Amber said: I have a seven year old rott who has spots all over her body and face. Her legs and feet as well as nails are all perfect coloring. I don’t believe she is stressed but she did rip her cruciate ligament a little less then a year ago and surgery was not a option so we healed it on our own. This could have helped these spots come out. I actually just thought she was gettin old, but once I researches it I found out that’s not the case… POOR PUPPIES # 6 May 2010 at 5:05 pm

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What Did Thomas Jefferson Think About Vitiligo?
12 July 2007 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.

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The Complete Guide to Vitiligo Corner for 2007 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.•

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Narrowband UV-B Treatment More Effective for Vitiligo than Psoralen UV-A Therapy
14 August 2007 Pearls for Practice At the end of treatment, 64% of patients in the NB-UVB group showed greater than 50% improvement in BSA affected by vitiligo vs 36% of patients in the PUVA group. All patients in the NB-UVB group had excellent color match of the repigmented skin vs only 11 (44%) of those in the PUVA group. At the end of follow-up, the color match in repigmented areas in all patients in the NB-UVB group remained excellent vs only 14 (61%) of 23 patients in the PUVA group. The following article was found on medscape.com May 23, 2007 ” More patients with vitiligo who receive narrowband UV-B treatment vs psoralen and UV-A therapy have improvement over 50% of their body, according to the results of a double-blind randomized trial published in the May issue of the Archives of Dermatology.“The combination of treatment with psoralen followed by irradiation with UV-A (PUVA) is a well-established treatment for nonsegmental vitiligo, but it has many disadvantages,” write Sami Sasi Yones, from the Guy’s, King’s, and St. Thomas’ School of Medicine, King’s College, London, England, and colleagues. “In the past decade, there have been reports of good efficacy using narrowband UV-B therapy (NB-UVB; 311-313 nm, TL-01 lamp, Koninklijke Philips Electronics NV, Amsterdam, the Netherlands) to treat the condition. To our knowledge, we report the first double-blind randomized trial of PUVA therapy using oral psoralen vs NB-UVB therapy for vitiligo.” At a phototherapy unit in a university hospital, 56 patients with nonsegmental vitiligo underwent twice-weekly therapy with PUVA or NB-UVB. The primary endpoints were the change in body surface area affected (BSA) by vitiligo - 20 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 and the color match of repigmented skin compared with unaffected skin after 48 sessions of therapy, at the end of the therapy course, and 12 months after the end of therapy. Data were analyzed from the 25 patients each in the PUVA and NB-UVB groups who began therapy. The median number of treatments was 47 in the PUVA-treated group and 97 in the NB-UVB“treated group (P = .03), which the investigators suggest was because of the differences in efficacy and adverse effects between the modalities, causing patients in the NB-UVB group to want a longer course of treatment. At the end of treatment, 16 (64%) of 25 patients in the NB-UVB group showed greater than 50% improvement in affected BSA, as did 9 (36%) of 25 patients in the PUVA group. All patients in the NB-UVB group had excellent color match of the repigmented skin, as did only 11 (44%) of those in the PUVA group (P < .001). Among patients who completed 48 sessions, the improvement in BSA affected by vitiligo was greater with NB-UVB therapy than with PUVA therapy (P = .007). The superiority of NB-UVB was generally maintained 12 months after treatment was stopped. There was no apparent association between success of treatment and duration of vitiligo. “The mechanism of action of all phototherapy in the treatment of vitiligo may very probably involve diminution of the immunological process followed by the stimulation of residual melanocytes, particularly those residing in hair follicles,” the authors write. “Our results firmly suggest that, in most patients, the NB-UVB form of this therapy is preferable to PUVA for the treatment of vitiligo.” Crawford Pharmaceuticals Ltd supported this study. The authors have disclosed no relevant financial relationships. In an accompanying editorial, Henry W. Lim, MD, and Camile L. Hexsel, MD, from Henry Ford Medical Center in Detroit, Michigan, review published studies and provide a suggested treatment algorithm.

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The Complete Guide to Vitiligo Corner for 2007 “In the past 10 years, several new methods of treating vitiligo have emerged, including NB-UVB therapy, targeted phototherapy, topical calcineurin inhibitors, and topical calcipotriene,” Drs. Lim and Hexsel write. “Refinement of surgical techniques has also continued. In 2007 … the question when managing patients with vitiligo, especially that involving exposed sites, is no longer whether to treat or not to treat but to decide which treatment method is most appropriate for the individual patient.” Dr. Lim has disclosed being a consultant for La Roche-Posay, Neutrogena Corp, and Orfagen and receiving research grant support from Johnson & Johnson. Arch Dermatol. 2007;143:578-584, 643-646.

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Pigment Cell Research August 2007
21 August 2007 I came across this very interesting and detailed medical study release. Some of it is a bit technical, but if you’ve read through as many medical journals as I have by now, from researching vitiligo, you’ll have no problem getting the gist of the article. NALP1 and the inflammasomes: challenging our perception of vitiligo and vitiligo-related autoimmune disorders Alain Taieb**Address correspondence to Alain Taeb, e-mail: [email protected] Inserm U876, Universite Victor Segalen, Bordeaux, France *Address correspondence to Alain Taieb, e-mail: [email protected] When looking at vitiligo skin, the disease seems clinically at least simpler than other common chronic skin disorders, such as atopic dermatitis or psoriasis. There is only a visible loss of pigmentation, and opposite to these other chronic skin conditions, inflammation is lacking. When taking a biopsy of vitiliginous skin, the evidence of inflammation is usually scarce or absent, even though some reports support a marginal infiltration of T cells (Van den Wijngaard et al., 2000). The microscopic features are dominated by a loss of melanocytes, without clear destructive process targeting those cells, and foci of pigment cell loss without inflammatory infiltrates have been documented in normal looking skin in generalized (non-segmental) vitiligo (Pretti Aslanian et al., 2007). The next question is then: why do melanocytes leave the epidermis and/or hair follicles? This question has generated several speculations (reviewed in Dell’anna and Picardo, 2006; Gauthier et al., 2003; Taieb, 2000), based on clinical or experimental data, but without definitive supporting evidence. As a consequence of this absence of basic understanding of the disease, therapies do not meet the patient’s needs (Whitton et al., 2006). - 23 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 The apparently simple problem of vitiligo is indeed one of the most challenging ones in dermatology and medicine. A good angle of attack to the problem is obviously lacking. Other common chronic disorders including skin disorders have benefited from the genetic angle. In 2006, a breakthrough was made in atopic dermatitis and related atopic disorders, a field also characterized by very contrasted opinions about pathophysiology and therapeutic options. A skin inherited basis, with a loss of function of a gene encoding filaggrin, a stratum corneum precursor protein, was found in 30-40% of cases of European descent individuals with the disorder (Palmer et al., 2006). Similar progress is expected to follow for psoriasis, which has a strong inherited component, and part of its heritability is probably also situated within the epidermal differentiation complex at 1q21 close to filaggrin (Cookson et al., 2001). However, when comparing common chronic skin disorders for monozygous twin concordance, an excellent marker of the inherited component in complex disorders, atopic dermatitis and psoriasis have definitely a more inherited profile than vitiligo: only 23% concordance for vitiligo (Alkhateeb et al., 2003), versus 35-56% in psoriasis (Brandrup et al., 1982; Duffy et al., 1993) and up to 72% in atopic dermatitis (Schultz Larsen, 1993). Furthermore, according to genome-wide linkage analyses for the generalized vitiligo phenotype performed in populations of various ethnic backgrounds, the major inherited loci are not the same (Chen et al., 2005; Fain et al., 2003). Thus, the genetic angle of attack has certainly intrinsic weaknesses in vitiligo research but, in derivation of it, the recent paper by the group of Spritz (Jin et al., 2007) offers an unexpected research avenue for vitiligo-associated autoimmune/inflammatory disorders. This study is based on previous reports of the same group that have shown a linkage between a locus on chromosome 17p13 and multiple autoimmune disease associated with vitiligo. This locus is not linked with vitiligo occurring in isolation. Scanning with SNPs (single-nucleotide polymorphims) the 11.3 cM interval of 6.19 Mb containing the putative autoimmune vitiligo gene at 17p13, the authors found one haplotype encoding the proximal coding region and the extended promotor region of the NALP1 gene (encoding NACHT leucinerich-repeat protein 1), which shows a significant but not considerable association with vitiligo and vitiligo-associated autoimmune diseases (odds ratio of less than 2). Further analyses led to the conclusion that two independent variants of the NALP1 region are associated with an increased risk of vitiligo-associated autoimmune/inflammatory diseases, - 24 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 one situated on the NALP1 gene, and the other upstream in a region involving the gene promoter. The functional significance of these genetic variants is still unknown. How much will this change our current (absence of) understanding of vitiligo? NALP1 is a NOD (nucleotide-binding oligomerization domain protein)-like receptor, a family of pattern recognition receptors for microorganisms, apoptotic fragments or cell debris, which also includes NOD2. Interestingly, variants of NOD2 are associated with Crohn’s disease, an inflammatory intestinal barrier disease (Hugot et al., 2001). In Crohn’s disease, variant NOD2 alleles cause a loss of physiological tolerance to commensal bacteria. As a consequence, immune responses develop that activate immunocompetent cells, resulting in the secretion of proinflammatory mediators that cause mucosal breaks and ulcerations. If NALP1 is physiologically close, its still unknown role in skin barrier is unlikely to provoke such a dramatic scenario causing a loss of pigment cells, because this would be clinically and histologically detectable. NALP1 is immunohistochemically found in epidermis within Langerhans cells (Kummer et al., 2007), but more precise studies focusing on pigment cells are lacking. NALP1 and 3 are part of cytoplasmic complexes called inflammasomes that regulate the activation of caspases which in turn convert proinflammatory cytokines into their active forms. Mutant NAPL3 phenotypes are known and are also clearly inflammatory causing disorders such as Muckle“Wells syndrome (Agostini et al., 2004). Several lines of evidence suggest that the skin itself is important in the primary pathogenesis of vitiligo such as Koebner’s phenomenon, the more severe presentation of segmental vitiligo when associated with generalized vitiligo, so that to sum up our current perception, some fragility in the epidermal melanin unit, which may have an inherited component, leads to a chronic melanocytorrhagy (Gauthier et al., 2003). However, as stated before, inflammation is clearly not a major part of the disease. Thus, if the inflammasome story holds true in vitiligo in the context of a personal or family history of autoimmune disorders, my guess is that it could help trigger or enhance the autoimmune part of the disease, which may involve initial contacts between melanocytes or melanocyte fragments and NALP1positive Langerhans, rather than being an initial factor in which a systemically dysregulated innate immunity would - 25 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 get rid of epidermal melanocytes as a priority. As noted by the authors of the NEJM paper (Jin et al., 2007), the NALP1 discovery is important to test new treatment options such as interleukin-1 (IL-1) receptor antagonists in autoimmune vitiligo and the group of vitiligo-related autoinflammatory disorders. This would be possible via the possible impairment of the NALP1-dependent regulation of the activity of caspases 1 and 5 which in turn modulate IL-1β activity. However, it is tempting to speculate that for the more common non-segmental vitiligo phenotype occurring in isolation, without demonstrated autoimmunity, there is an intervention of a low key activation of the huge reservoir of IL-1β which is found in the stratum corneum. For instance, mechanical trauma might be such an environmental candidate factor leading to events that could subsequently destabilize the anchoring of basal melanocytes, without creating clinical or histological inflammation. In the epidermis, IL-1β is produced as a biologically inactive 31-kDa precursor, which is converted to the active 18-kDa form by proteolytic processing. Keratinocytes do not express the active form of the specific IL-1β-converting enzyme. Thus, the activation in situ of IL-1β remains elusive. NylanderLundqvist and Egelrud (1997) have already shown that IL-1β activation in human epidermis can occur via an alternative mechanism involving stratum corneum chymotryptic enzyme (SCCE or kallikrein 7), a serine protease specifically expressed in keratinizing squamous epithelia. I would thus propose to take a look at this proposed alternative pathway of activation in vitiligo, which, if implicated, would support the view that many events occurring in skin physiology and disease are under the control of the most differentiated part of the epidermis, the stratum corneum (Elias et al., 1999). This would also fit the idea applicable to common skin disorders that the evidence is frequently closer to our eyes than expected due to complex speculations, as highlighted in Edgar Allan Poe’s famous short story, the purloined letter (Taieb, 2007).

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An Idea That’s Working
12 September 2007 I received this comment today… Hello everyone, I am from Western New York. The treatments I have been doing seem to have had a positive change. I am taking folic acid, Vitamins E and C, as well as PABA two to three times a day. In doing this, I have started to get large patches of brown spots.

Hi Thanks for your comment today. I have a few questions for you so that when others read your comment they can get a better idea of your situation compared to theirs. How long you’ve had vitiligo? What is your skin tone? Where are your white patches and which were the first areas to re-pigment? How much of each supplement do you take? All the best, Nathalie

Hi Nathalie, I am 20 years old and i have had it for what would be going on 11 years. My white patches are in the normal areas; my face, behind my ears, chest, under my arms, elbows, knees, starting to go down my legs and my feet. I recently developed it on my hands within the past year. I have patches on my upper arms that are new; they developed around April of this year. After getting a sunburn over the summer, the spots on my upper arms seemed to fill in quite a bit, as well as my chest (around my collar bone area). I take about 15 vitamins a day. The PABA is the one that seems to be working the best in the re-pigmentation process. I go tanning once or twice a week for no more than 5 minutes. My nationalities are half Italian, quarter Ukrainian and quarter German. I look mostly Italian, and Ukrainian. I have olive - 27 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 skin tones so when i tan I do not turn red like most Caucasians, I turn almost black. I tan VERY easily, so when I got this disease I was devastated. I take 500mg of Spirulina, 300mg of Pantothenic Acid, 500mg Vitamin C, 800 I.U. of E, 2400mg of Folic Acid, 1000mg of fish oil (for my arthritis) and 4100mg of PABA through out the day.

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13 Comments
Tori Sessions said: I wanted to write and say thank you for this site. I also wanted to share a little of my story. I began not feeling very well, and pulled gluten from my diet, because a md friend of mine suggested trying that first, based on the fact that I was alergic to wheat when I was little. So I began studying Celiacs,interestingly enough it is also a base of other autoimmune dissorders. My family has different autoimmune dissorders on both sides. So it seemed logical. Lupus, vitiligo, ITP, lymphocytopenia (not sure how to spell that one…) and many other very rare autoimmune dissorders that I cant recall the names of. I never had any problems, until now, 30 yrs. this is what I found. I put together a regimen based on my findings last week of b12 injections, folic acid, vit. c, chlorophyll, blackstrap molasses, and buckwheat. I am now adding PABA. I noticed yesterday that I was beginning to get small white spots on my legs. (Which is what brought me here They are tiny, but my grandmother has Vitiligo, and well I knew exactly what it was. Strange thing is, each prob. I have had, fibromyalgia, heavy menstruation, light headedness, and beginnings of vitiligo, all lead me to this same remedy? I will let you know if it goes away, but I thought it interesting, and thought that I would share. Celiacs is where the lining of the small intestines are damaged from gluten. Once damaged your body can not digest or use the nutrients taken in orally. Once gluten is taken from the diet, the small intestines are able to rebuild. Most with celiacs have anemia, which is why I decided to add the blackstrap molasses, b12 injections, and vit. c. but it seems linked with what people on thisi site are doing, and with good results.# 29 September 2007 at 10:15 pm

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Nathalie Pelletier (author) said: Tori, I like your positive spirit and your relentless quest to find a way to help yourself…so much so, in fact, that your inspired my latest blog, thank you! I know that anytime we try a new regime it is necessary to have patience for the results, but we look forward to hearing about any progress that you make. annie laudato said: hello i have this vitiligo and trying to figure how to stop it. Had it stopped and regressing but summer came and it is growing again # 30 December 2007 at 8:41 pm Nathalie Pelletier (author) said: Hi Annie, Thanks for your comment. I haven’t tried anything in particular to stop the vitiligo, but I have heard from other readers, and I have read on a couple of respectable medical websites, that Ginkgo biloba has helped put the vitiligo in remission. http://www.mayoclinic.com/health/ginkgo-biloba/NS_patient-ginkgo I hope this helps. All the best, Nathalie - 30 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 # 30 December 2007 at 10:52 pm mp said: Useful site. Thank you! # 25 March 2008 at 4:45 am Matt said: i recently (november 07) noticed a white spot on my genitals. i really didn’t think much of it until it started spreading. I now have lost about 50% of color in that area. I went to the derma and he confirmed that it was vitiligo. I’ve also started noticing it on my stomach and feet. Is there anyway to slow the progression? I have an appointment with an endo next week and really believe that Hyperthyroid or Addisons is what i might have. If so, will treatment slow the white spots? I’m a white male in early thirties….fyi # 1 April 2008 at 1:29 pm Matt said: Also, I haven’t started taking any vitamins yet. What should i start taking and how much? Thanks for the help on this. I’m scared to death! # 1 April 2008 at 1:31 pm

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The Complete Guide to Vitiligo Corner for 2007 Nathalie Pelletier (author) said: Hi Matt, I take vitamin B12 sublingual, D (800 IU) , a B complex tablet, & Folic Acid 1200 mcg. You’ll want to do some research for the amounts according to your body weight, but taking supplements is a good place to start. Matt, don’t be scared…believe me, having a diagnosis of vitiligo is much better than some life threatening disease. let us know how it goes with the endo next week…i have a hyperthyroid and it’s often linked to vitiligo. all the best to you!nathalie # 2 April 2008 at 11:29 pm Matt said: went to the endo and nothing. she said everything looked ok. i went to hilton head over the weekend and found out that it’s all over my face. the sunburn i got was really bad in spots even though i was wearing sunscreen. i’m going to start trying your supplements and see what happens. have you tried the “light box”?thanks, Matt # 1 May 2008 at 10:12 am Mark said: Nice blog. I’ll definitely be back. Thanks again, Shayne # 2 February 2009 at 10:24 pm

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The Complete Guide to Vitiligo Corner for 2007 Anne said: I am 14 years old, my vitiligo started when I was 9. My dad has it too, which is weird because the doctors say its not hereditary. Its on my chest, stomach, elbows, kneees, and the back of my neck. I take folic acid. Anything else that will help? Thank you, Anne. # 6 September 2009 at 6:20 pm Russ said: I noticed it on my genitals around age 28. It has only spread about fifty percent in that area the past twenty five years. I have gotten a few new small spots on my legs and hands over the last couple of years but they come and go. I have always taken supplements as an adult. Fish and flaxseed oil, E,C, B complex, minerals, garlic oil, gingko among others. I have recently started eating according to my blood type to regain some energy and that part is working great. No wheat products allowed (gluten). There is some speculation that gluten may play a role in certain people that have vitiligo. I wish I could remember where I read that. I will give you an update in six months if there is any change. # 17 November 2009 at 3:16 pm

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The Complete Guide to Vitiligo Corner for 2007 Angela said: Hi, I’m 40 years old, I have had Vitiligo for the past 20 years, started with a small spot on my hand and it spread consistently. In the past 3 years I have had 2 children, and I noticed that my vit started re-pigmenting in the past year or so. I also had a sunburn this past summer (caught without wind while sailing in the Aegean for 4 hours) and it looks like I started re-pigmenting where I got the sunburn, lower legs and arms. I don’t know if taking the prenatals which are rich in folic, and other vitamins or the sunburn or a combination of all that caused me to repigment. My face and neck are still unchanged no color in the white spots, which is a large area on my forehead and chin/mouth. I also have hypothyroidism, and taking my synthroid daily. I recently got tested for celiac, still waiting for the results. My younger sister also has the vit, but not hypothyroid. Can’t wait for a cure. Thank you all for sharing, maybe together we can find a cure.Best, Angela # 17 December 2009 at 4:35 pm

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Vitiligo: A State of Mind
30 September 2007 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!” - 35 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 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 selfworth, not much can stand in your way of being content.

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One Comment
Tori Sessions said: Thank you for the blog… I do want to make one more comment. I do believe in the aid of doctors, but as a friend of many who are, I have heard it said more than once that doctors are using a list of ideas as well, and help from the patient is not a bad thing. If something doesn’t work go to the next known thing, and down the list of possible cures until you do. Product of elimination. If you feel in your gut something will work, Try it… do not discount that, only you know how you are feeling, and what makes you feel better. If you are sick and chocolate milk makes the nausea go away, who cares what someone else thinks about that. Maybe it works for you, and there is nothing wrong with that is there:) I am going to the dermatologist, and I am very thankful we have doctors and for all the hard work they do in trying to cure and help, as long as the patient is not discounted either. They are there as a help for you, not as a cure all… but they do the best they can with the knowledge they have studied and been given. # 1 October 2007 at 12:31 pm

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Vitiligo-Celiac Connection?
27 November 2007 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 led 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. - 38 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 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 cnconclusive, 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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8 Comments
Tasha said: HI! I have hypothyroidism and vitiligo, and I have had a practioner of “body talk” treat me. What we are finding is a problem with my small intestine which is related to the vitiligo. I too am going to try to do the non-gluten and anti candidas diet, but it is so hard…Maybe we can trade recipes. # 12 February 2009 at 1:09 pm KCee said: Hi, I too was diagnosed with Vitiligo at age 10, Celiac disease and Hypothyroidism diagnosed postpartum (along with Vit D and iron deficiencies – the latter first identified at age 5). I strongly believe there is a definite connection between all these conditions. # 7 March 2009 at 1:06 am missee said: i’ve also got vitiligo and hashimoto’s (autoimmune hypothyroidism)…vitiligo appeared when i was about 24, hashi’s about 29, also was told i had gluten intolerance by doctor when i was about 24 but never been tested for coeliac…. am also gettign some crazy dermatitis lately might be from the oroxine but have been on a gluten free diet about 1 month now. - 40 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 *First two weeks of gluten free the worst, it feels a bit like a ‘withdrawal’, but after that you won’t really miss it too much (promise) *my hunger has decreased now so not really wanting bulky bread / pasta type foods to fill up on anyway. not as much willpower needed as you might think … I have found it easiest to focus on putting veges or salad as main part of every meal (and is cheaper than buying ridiculously expensive gluten free cereals, breads etc)…… am eating alot of mushrooms, eggs etc. make dips etc yourself… *have lost a kilo or two but probably just from decrease in appetite. *also taking big Vit B group dose and Vit D… skin is also improving… *After 2 – 4 weeks feeling much better no more nasuea, stomach pain , toilet issues etc etc etc!! …. is definitely helping on the the PMS/thryoid side as well…just waiting to see if there’s any long term changes with the vitiligo but i’m definitely feeling a million bucks in comparison!# 13 April 2009 at 12:03 am Jenna said: I have vitiligo (diagnosed around age 8), hypothryoid and celiac (both diagnosed about a year ago). I have been following a gluten-free diet for a year now, and have not seen improvement with my vitiligo (although between the new diet and thyroid medication, my energy and general health have improved). I believe all three are related, and am looking for anything that will help my vitiligo.# 9 July 2009 at 2:48 pm Amanda said: Hi, I’m another vitiligo sufferer diagnosed with hypothyroidism, lately diagnosed with silent celiac disease. If you suffer from vitiligo check if you are gluten intolerant even if you don’t have the classic symptoms, there is more evidence now that gluten intolerance can trigger a whole bunch of autoimmune diseases. Find a good doctor. My

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The Complete Guide to Vitiligo Corner for 2007 gluten intolerance probably started the vitiligo, then attacked my thyroid, the fatigue, the moods, the depression, and God knows what else.# 17 July 2009 at 11:38 am Katie said: Hi, I have vitiligo (diagnosed around age 7), I also have psoriasis (another autoimmune disease) and tonsil stones (which are, according to my research, related to gluten allergy). Unfortunately, my doctors (I changed doctors a few times already) don’t see a correlation between all these diseases. My current doctor brushed me off with the gluten allergy idea, saying that if I had it I would have hives or something else. I’ve been on the gluten free diet for 3 weeks already, don’t see improvement in my skin yet, but have not gotten any tonsil stones which I used to get very frequently.# 10 December 2009 at 9:28 am Andreas said: My vitiligo started almost two years ago, the first dermatologist came highly recommended, voted #1 in Fairfield County, but was ignorant about the vitiligo and more concerned about expensive botox injections. This August ‘09 I was diagnosed with celiac sprue, I changed my diet immediately and felt better within the first week. I informed the second dermatologist of the diagnosis and even though he was well aware of the vitiligo and had ran some test previously, like B12, liver, etc, which were within tolerance levels, but not extremely enough for him to investigate further about my symptoms. He was surprised when I told him two weeks later about me being diagnosed as a celiac, other than that he had no help to offer or thoughts regarding a corelation. Some doctors are like bad car mechanics, they can make matters worse. We, the affected, know that something is wrong and often know more than the doctors regarding the connections. - 42 Visit Vitiligo Corner Visit Vitiligo Cover Lotion

The Complete Guide to Vitiligo Corner for 2007 Celiac and vitiligo are relatively new diseases being researched, it is up to us to learn as much as we can and find specialists that are aware of these diseases and open to do some research and open to challenges. Going gluten free was not that difficult, it is a much healthier way of eating anyway, and doesn’t have to be that expensive, there is no other cure. For me is was life changing, mentally and physically. The vitiligo didn’t have any impact on my physical or mental health, but celiac sprue did. Which triggered which, or what triggered both, I can’t say, but I am very, very certain that there is a connection. The challenge now is to find a physician who is progressive. My vitiligo is still advancing, but at a slower pace, but it can’t intimidate me. I am bigger than vitiligo. I have spent a lot of time since August educating myself on celiac and now I am physically and mentally ready to battle the vitiligo.

Don’t let your doctor brush you off with your concerns, he may not be aware or interested in new challenges, go find a better physician. The bigger cities have universities doing research and specialists that are more aware of diseases and current research results.

There is plenty of information available online about celiac sprue. Celiac sprue is dangerous and can kill you if left undiagnosed and untreated. All the best and happy holidays # 23 December 2009 at 11:02

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The Complete Guide to Vitiligo Corner for 2007 Jenn said: Thank you all for your wonderful stories here. Just reading your thoughts helps me feel supported in this journey. I was diagnosed with Thyroid cancer 7 years ago, contracted vitiligo 5 years ago, and started to have severe stomach problems 1 year ago. All of my doctors (dermatologist, endocrine and internal) told me they are unrelated, but I just felt there was something missing. I went gluten free 2 months ago, and although the vitiligo is still present, the mental fogginess, tiredness, hormonal and stomach problems are almost gone. My belief…We know more about ourselves and our health than we think we do. We just need to remember to stop and listen.# 27 December 2009 at 5:03 pm

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International Vitiligo Organizations
American Vitiligo Research Foundation Italian Vitiligo Society (Associazione Italiana Ricerca e Informazione Vitiligine) Korea Vitiligo Association Spanish Association of Vitiligo Patients (ASPAVIT) Vitiligo Society UK Vitiligo Support and Awareness Foundation (VITSAF) of West Africa Vitiligo Support International Vitiligo Weblap (Hungarian Vitiligo Community and Website)

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About the Author
NATHALIE PELLETIER is the creator of Vitiligo Corner. She’s written 10 other ebooks, started a few Internet companies, and writes a blog. Subscribe Sign up for our free e-newsletter to learn about our latest opuscules as soon as they are available. Born on date This document was created on December 31, 2007 and is based on the best information available at that time.

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Copyright info The copyright of this work belongs to the author who is solely responsible for the content. This work is licensed under the CreativeCommons AttributionNonCommercial-NoDerivs License. To view a copy of this license, visit Creative Commons or send a letter to Creative Commons, 559 Nathan Abbott Way, Stanford, California 94305, USA. Cover image from iStockphoto®

WHAT YOU CAN DO You are given the unlimited right to print this manifesto and to distribute it elctronically (via email, your website, or any other means). You can print out pages and put them in your favorite coffee shop’s windows or your doctor’s waiting room. You can transcribe the author’s words onto the sidewalk, or you can hand out copies to everyone you meet. You may not alter this manifesto in any way, though, and you may not charge for it.

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