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In This Issue

Message From the
Executive Director

What Do You Want From
From a Vitiligo Treatment?

Now Visit VSI
on Facebook


Vitamin D and Vitiligo:
Updates and Information

CAMP DISCOVERY!

Fall Poll Results:
Did Stress Trigger Your Vitiligo?


What's On Your Mind?

  • Will the hair growing from
    a depigmented area also
    turn white?
  • Does it matter how long
    you wait before beginning
    vitiligo treatment?

Medical News Updates

  • Scenesse/Clinuvel
    Update!
  • Does Having Vitiligo
    Protect You From Melanoma?
  • Did Your Vitamin D Level
    Trigger Your Vitiligo?

Research & Clinical Trials

  • Vitiligo Clinical Trial for
    Men in MA Who Are Taking
    Cholesterol Medication
  • Volunteers from USA and
    Canada Needed to Complete
    Vitiligo Questionnaire
  • Patients and Controls
    Needed for Online
    Vitiligo Survey

Bibliography

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VSI Medical and Scientific
Advisory Committee


Pearl E. Grimes, M.D., Committee Chair
Ted A. Grossbart, Ph.D.
Sancy A. Leachman, M.D.
I. Caroline Le Poole Ph.D.
Mauro Picardo, M.D.
Nanette B. Silverberg, M.D.
Richard A. Spritz, M.D.
Alain Taieb, M.D., Ph.D.
Wiete Westerhof, MD, Ph.D.

For more information
on VSI's MSAC Click Here

 
 

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Message From the Executive Director

Dear Members and Friends of VSI,

Vitamin D is a growing focus of research interest. A wide variety of diseases, such as cardiac disease, neurological disorders, autoimmune disease, and various cancers, are now being studied for a possible link to vitamin D insufficiency. Conflicting opinions and data on the effectiveness of supplementing with vitamin D/maintaining higher base levels of vitamin D to combat these conditions have made it difficult for the average person to know what to do. In 2010, the National Academy of Sciences Institute of Medicine (IOM) issued revised dietary and  testing guidelines concerning how to maintain a healthy level of vitamin D.

So why is this important for people with vitiligo?  According to preliminary research, having low blood levels of vitamin D may trigger vitiligo, an autoimmune disease, as well as secondary autoimmune disease in vitiligo patients. A US study found that many vitiligo patients had low levels of vitamin D as well as a greater risk of secondary autoimmune diseases like Hashimoto thyroiditis, lupus and others. A Chinese researcher has just reported that the dysfunction of the vitamin D receptor (VDR) gene may be involved in the cause of vitiligo. This research, and what it means for vitiligo patients, is summarized in this issue.

The pace of research has quickened and technology continues to improve. VSI will be meeting with vitiligo researchers from the United States and around the world this year to discuss avenues of promising research and how VSI can help. We encounter many opportunities to collaborate with medical, research and commercial interests as a result of our hard work. We can see a very promising future, but we can't reach it without increased funding.

We rely on the support of a few, but we need the support of many more who care about vitiligo research and awareness. If you find the newsletter helpful, you feel vitiligo research is important, and you want a national organization like VSI to speak out on your behalf, your gift today will help us continue this work.

Sincerely,


Jackie Gardner
Executive Director

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Vitamin D: Updates and Information
Can Vitamin D Affect Vitiligo?


Vitamin D insufficiency may be a factor in triggering vitiligo according to recent research. This finding is consistent with the current belief of many researchers that vitamin D, in addition to maintaining bone strength, may also have a role in maintaining the health of various organs and systems.  A wide variety of diseases, such as cardiac disease, neurological disorders, autoimmune disease, and various cancers, are now being studied for a possible link to vitamin D insufficiency. While more research is needed to better understand these links, it is important that everyone with vitiligo be aware that maintaining healthy levels of vitamin D may prove helpful in managing vitiligo as well as in protecting against secondary disease.

What is vitamin D and how do we get it?

Vitamin D is actually a hormone predominantly generated by the action of ultraviolet light on the skin. Since one of its primary functions is to maintain normal production levels of calcium and phosphorus, it is most well-known for helping to form and maintain strong bones. More recently, certain autoimmune disorders (including vitiligo) have been linked to low vitamin D levels, which may be due to vitamin D's anti-inflammatory and immune-modulating properties.

Vitamin D has several forms, but the form of greatest importance is vitamin D3 (also known as cholecalciferol), which is synthesized in the skin when it is exposed to sunlight.  Sunlight is the greatest source of vitamin D for humans. Historically, about 90% of our required vitamin D was synthesized from the effects of UVB rays on the skin. The remaining 10% came from the few foods in nature which contain vitamin D. Cod and fish oils and fatty fish such as salmon, tuna, sardines and mackerel are among the best sources. Beef liver, cheese, egg yolks and mushrooms provide small amounts. 

Today, we have less overall exposure to sunlight. Despite this, however, the availability of supplements, multivitamins and foods fortified with vitamin D has helped most Americans maintain adequate levels of vitamin D according to the National Academy of Sciences, Institute of Medicine (IOM), which sets the national standards for intake of vitamins and other nutrients. Almost all of the U.S. milk supply is fortified with vitamin D, as are many breakfast cereals and some brands of orange juice, yogurt, margarine, and soy beverages.

Interestingly, researchers have found that exposing mushrooms, already a natural source of vitamin D, to either sunlight or UVB light can dramatically boost their vitamin D levels. UV-exposed mushrooms are available in some stores, but the research showed that the vitamin D levels of any mushrooms can be boosted by sunlight, even with only a couple of hours of exposure. The increased levels of vitamin D produced were long-lasting even when the mushrooms were cooked or dried, without any loss in vitamin content. A German study found that vitamin D levels were comparable between those who took supplements and those who ate UV-enhanced mushrooms. Some mushrooms are very high in tyrosine, an amino acid involved in pigment production. An Iranian study also showed that one of the components of mushrooms, tyrosinase, inhibited vitiligo in mice, and surmised that consuming mushroom tyrosinase may be of benefit to those with vitiligo. Since some mushrooms also stimulate the immune system, which some recommend avoiding with autoimmune disease, you should first discuss adding an abundance of mushrooms to your diet, with your doctor.

Is there a link between vitamin D and vitiligo?

Recent studies have pointed to a possible connection between vitiligo and vitamin D levels. One study of a village in Romania found many families with vitiligo and other autoimmune diseases who also had a genetic abnormality in a vitamin D receptor (VDR) gene. A similar genetic abnormality in the VDR gene was found by Chinese investigators in 749 patients with vitiligo, adding additional evidence of a connection between this gene and vitiligo.

A 2010 US study also found evidence of a potential vitamin D linkage. A majority of vitiligo patients were found to have low to very low levels of vitamin D. Also, in this group, over 13% had secondary autoimmune disease. The study authors concluded that very low vitamin D levels would be a good screening criteria for the presence of additional autoimmune disease in vitiligo patients.

How much vitamin D do I need?

The necessary amount of daily sunlight one needs to synthesize a sufficient level of vitamin D varies with age, skin type, season, latitude, time of day, etc. During periods of sunlight, vitamin D is stored in body fat and then released when sunlight is gone.

If one cannot get enough sun exposure, vitamin D supplements (vitamin D3/cholecalciferol) can provide an alternate source. Short-term treatment of vitamin D deficiency may require doses of vitamin D that exceed the IOM’s recommended maximum amount of 4,000 IUs. People with certain conditions, such as primary parahyperthyroidism, sarcoidosis, the presence of kidney stones, unexplained hypercalcemia, renal insufficiency or kidney failure, or people at risk for vitamin D deficiency, should use vitamin D supplements only under the guidance of a physician.

Assuming minimal sun exposure, the IOM recommends the daily dietary vitamin D intake (food or in combination with supplements) shown below.

Dietary Reference Intake for Vitamin D

Life Stage Group
(Males/Females)
Recommended Dietary Allowance
(IU/day)
Upper Level Intake*
(IU/day)
     
Infants 0 to 6 months 260 1,000
Infants 6 to 12 months 400 1,500
1-3 years 600 2,500
4-8 years 600 3,000
9-70 years 600 4,000
Over 70 years 800 4,000
Females: pregnant/lactating 600 4,000
 

* Maximum IUs one can take per day without harm.
Upper level dosage not recommended unless under physician's care.
Source: National Academy of Sciences, Institute of Medicine, 2010

If one gets midday sun exposure during warmer months and regularly consumes foods rich in vitamin D, supplements most likely are not needed. People who have the risk factors discussed below might need supplements, though the amount in most multivitamins may be enough.

Who is at greater risk for low levels of vitamin D?

Factors that increase the risk for vitamin D deficiency include:

  • Darker skin, since the darker pigment acts as a natural sunscreen
  • Limited sun exposure, either from the use of sunscreen, staying indoors or covering with clothing
  • Age - older skin is less capable of producing vitamin D, and breastfed infants do not receive vitamin D from breast milk
  • Those with a disease or condition contributing to malabsorption, such as: celiac disease, chronic liver disease, chronic pancreatitis, Crohn's disease, irritable bowel syndrome, lactose intolerance, gastrointestinal surgery, alcoholism, type 1 diabetes, autoimmune thyroid disease, autoimmune liver disease or rheumatoid arthritis
  • Heavier body weight and greater % of body fat
  • Cloud cover, pollution, time of day/year and location: Cloud cover and pollution can block sunlight from reaching the earth. Around noon when the sun is at its highest, its rays have the least distance to travel through the atmosphere and, therefore, UVB levels are at their peak. In the early morning and late afternoon, the sun’s rays are at an angle and their intensity is greatly reduced. The sun’s angle also varies with the seasons, causing the intensity of UV rays to change. UV intensity tends to be highest during the summer months. From November to February, vitamin D production lessens in higher latitudes (greater than 37°N, a line roughly running through the northern borders of Texas and New Mexico, and just below San Francisco and Richmond, Virginia).

The sun’s rays are strongest at the equator, where the sun is most directly overhead and UV rays must travel the least distance. At higher latitudes, because the sun is lower in the sky, UV rays must travel a greater distance through ozone-rich portions of the atmosphere and are less intense as a result. 

What Happens if You Take Too Much Vitamin D?

People can experience side effects from vitamin D if they take too much over an extended period of time. The side effects typically relate to levels of calcium that have become too high because calcium absorption works in synergy with vitamin D. Side effects from excessive levels of vitamin D include weakness, fatigue, sleepiness, headache, loss of appetite, dry mouth, nausea, and vomiting.

Medication Interactions

Some medications interfere with vitamin D metabolism; in some cases resulting in increased levels of vitamin D, in other cases resulting in lower levels of vitamin D. Alternately, vitamin D can interfere with some drugs, making some more effective and others less effective. Since higher vitamin D levels increase calcium absorption, combining supplemental vitamin D with some medications may raise your calcium levels too high. If you are regularly taking any of these medications, you should discuss your vitamin D intakes with your doctor.

Drugs that can increase calcium levels when vitamin D is taken:

Digoxin (Lanoxin) This medication treats irregular heart rhythms. Vitamin D supplement may cause levels of calcium to get too high in the blood.

Calcipotriene (Dovonex) This is a vitamin D3 based topical medication prescribed for psoriasis and vitiligo. Taking an additional vitamin D supplement when using this topical prescription could cause calcium levels to get dangerously high in the blood.

Drugs made less effective by vitamin D:

Atorvastatin (Lipitor) Taking vitamin D may reduce the amount of Lipitor absorbed by the body, making it less effective. Anyone taking a statin, or cholesterol-lowering drug, should discuss vitamin D supplementation with his/her physician.

Calcium channel blockers Vitamin D supplements may interfere with the effectiveness of high blood pressure and heart condition medications.  Examples of these drugs are: nifedipine (Procardia); verapamil (Calan); nicardipine (Cardene); DitiaZem (Cardizem, Dilacor); and amlodipine (Norvasc).

Diltiazem (Cardizem, Dilacor, Tiazac) These drugs are used to manage chronic stable angina and angina due to coronary artery spasm. Vitamin D helps the body absorb calcium. Calcium can affect the heart. Taking a large amount of vitamin D may decrease diltiazem’s effectiveness.

Vitamin D may increase how quickly the liver breaks down these medications, decreasing their effectiveness

Lovastatin (Mevacor)   indinavir (Crixivan)
clarithromycin (Biaxin)    triazolam (Halcion)
cyclosporine (Neoral, Sanimmune)

Drugs that may increase vitamin D blood levels:

Estrogen: This hormone raises vitamin D levels in the blood, which may promote calcium and bone strength. Also, taking vitamin D supplements along with estrogen replacement therapy (ERT) increases bone mass more than ERT alone. This may not be true if you are taking progesterone.

Isoniazid (INH): a medication used to treat tuberculosis

Diuretics: Reduce an accumulation of fluid in your body. As a result, they can increase vitamin D activity and lead to high levels of calcium in the blood.

chlorothiazide (Diuril)   chlorthalidone (Hygroton)
hydrochlorothiazine (HydroDIURIL, Esidrix)
indapamide (Lozol, metolazone (Zaroxolyn)

Drugs that may lower vitamin D blood levels:

Antacids: Long-term use of antacids may change the levels, metabolism, and availability of vitamin D.

Anti-seizure medications:

phenobarbital; phenytoin (Dilantin);
primidone (Mysoline);
valproic acid (Depakote)

Corticosteroids (prednisone) Long-term use of corticosteroids can cause bone loss. Supplements of calcium and vitamin D can maintain bone health. Supplements may be especially important in this case.

Bile acid sequestrants taken to lower cholesterol, such as cholestyramine (Questran, Prevalite) and cholestipol (Colestid)

Rifampin: Used to treat tuberculosis.

Mineral oil: Interferes with vitamin D absorption

Weight-loss drugs: orlistat (Alli, Xenical)  Prevents body from absorbing fat. May prevent absorption of fat-soluble vitamins such as vitamin D. Orlistat patients are often prescribed a multivitamin along with fat-soluble vitamins.

How do I know if I have a sufficient level of vitamin D?

Even with the recommendations of the IOM, there is no scientific consensus on the appropriate amount of vitamin D the average person should take. Some scientists feel that the dietary intake levels should be much higher, up to 10,000 units or more. However, in the words of one of the authors of the IOM guidelines, JoAnn Manson, PhD, MD, “It is our opinion that vitamin D deficiency is not as widespread as reported because laboratories across the country are using different cut points that overestimate the number of people with vitamin D deficiency.”

The IOM defines vitamin D deficiency as anything below a minimum blood level of 30 nanograms per milliliter of blood (ng/ml) and an optimal blood level of 50 ng/ml. A simple blood test called  "25-hydroxyvitamin D," also called 25(OH)D (includes the sum of vitamin D2 and vitamin D3), will provide your vitamin D level and is the only way to confirm that you are getting an adequate amount of vitamin D. Many physicians automatically conduct the test on high-risk groups (including people who are overweight, 50 and over, etc.), but you can always ask your physician for the test. If the results of your test are abnormal or unexpected, you should discuss them with your physician.

Controversy over Supplements

Not all scientists agree that increasing vitamin D levels is helpful, either in cancer prevention or even in preventing fractures, previously thought to be its main purpose. Others are adamant that maintaining a healthy level of vitamin D increases lifespan and decreases the risk of several cancers, along with strengthening bones, of vital interest to the elderly who are at risk of falls and fractures. Since studies can be found to support either side, there’s plenty of room for disagreement.

Studies Urging Caution

A government panel recently recommended against the daily use of vitamin D supplements by healthy, post-menopausal women. It said the science is not sufficiently developed to claim any benefits from vitamin D supplements for this group of women and the science, in fact, was still out for pre-menopausal women and women, stating that studies examining vitamin D’s role in reducing cancer risk were mixed, and therefore inconclusive. While it did find that supplementing with vitamin D and calcium decreased the risk of falls in the elderly, it was unsure of their benefits in preventing fractures.

There is also concern that people might take too much vitamin D, raising their levels too high. A group in Copenhagen reviewed blood sample results from almost 250,000 Copenhageners (Denmark has a civil registration system that makes these studies possible) and found that, while low levels of vitamin D increase mortality, so do high levels over 140 nanomoles per liter. While they were unsure of the reason for the increase in mortality at higher levels of vitamin D, they said that it may cast doubt on the ‘more is better’ crowd, and that more research is needed in this area.

Studies Supporting Supplementation

Researchers at McGill University in Canada have just published a study showing that the active form of vitamin D works to slow down progression from pre-malignant cells to malignancy, and may also slow down the reproduction of cancerous cells. One of the authors, Dr. John White, stated, “We hope that our research will encourage people to maintain adequate vitamin D supplementation and will stimulate the development of large, well-controlled cancer chemoprevention trials to test the effects of adequate supplementation.”

In 2010, a team led by Dr. Joan Lappe from Creighton University published results of a study on 1,179 healthy postmenopausal women. The women were randomly assigned daily doses of calcium alone, calcium plus vitamin D, or placebos. After four years, they found that while both groups taking supplements had a dramatically lower risk of developing cancer, the risk was even lower in the group that took vitamin D as well. The study also showed that the higher the blood level of vitamin D, the lower the cancer risk. This study led the Canadian Cancer Society to recommend that all adult Canadians take a daily supplement of 1,000 IU to minimize cancer risk (Canada’s latitude places them at higher risk of deficiency). According to Dr. Lappe, “it’s inexpensive, it’s safe, and it’s easy to take. It’s something that should be considered by a lot of people. It’s low-risk with maybe a high pay-off.”

Also in 2010, a research team from Oxford University in England found significant links between vitamin D receptors, which control how the genes use vitamin D, and genetic regions associated with several autoimmune diseases, including multiple sclerosis, Crohn’s disease, and type 1 diabetes (diseases also sharing genes with vitiligo), and also regions associated with some types of cancer. They noted that vitamin D might play a role in a vast variety of biological processes. The lead investigator said their findings indicated that vitamin D was involved with the development of these diseases and that there could be serious risks from vitamin D insufficiency, especially in those genetically prone to be deficient. He went on to say, “Considerations of vitamin D supplementation as a preventative measure for these diseases are strongly warranted.”

What should a person with vitiligo do?

Deficiency in vitamin D has been widely regarded by researchers as a possible environmental trigger for many autoimmune diseases, theorizing vitamin D deficiency could not only trigger the onset of an autoimmune disorder, but also cause the disease to worsen. Though more research is needed to understand the nature of this linkage, people with vitiligo should discuss with their physician the possible benefits of maintaining adequate levels of vitamin D as part of managing their vitiligo as well as to screen for the development of other autoimmune disorders. 

(Back to Top)

Camp Discovery 2013

The American Academy of Dermatology (AAD) is celebrating the 20th Anniversary of Camp Discovery with six weeks of Camp in five states; providing an amazing camp experience to approximately 350 children each year.

There is no fee to attend; full scholarships, including transportation, are provided by the AAD through generous donations from its members, outside organizations and individuals.  All campers must be referred by their dermatologist.

2013 Dates:

  • Little Pine, Crosslake, MN – ages 10-14 – June 23-28
  • Camp Reflection, Carnation, WA – ages 8-16 – June 24-28
  • Big Trout, Crosslake, MN – ages 14-16 – July 7-12
  • Camp Horizon, Millville, PA – ages 8-13 – August 10-17
  • Camp Dermadillo, Burton, TX – ages 9-15, August 11-16
  • Camp Liberty, Hebron, CT – ages 8-16, August 11-17

Referral forms are available now, and the application deadline is April 15, 2013. For more information about attending or volunteering, please visit the Camp website at www.campdiscovery.org,  or contact Janine Mueller at 847- 240-1737, or by email: jmueller@aad.org

To read a firsthand report from a VSI member
who attended Camp Discovery: Click Here

 

 

Fall Newsletter Poll Results: 
"Impact of Stress on Your Vitiligo"

 

 

What's On Your Mind?


Q. Since people with vitiligo tend to lose skin pigment in patches, does the hair growing out of these patches also lose pigment?

  1. The loss of pigment from vitiligo is due to the body's immune system attacking the melanocytes, which are the pigment making cells. The melanocyte reservoir is located at the base of the hair follicle. As the melanocytes are attacked and begin to die off, the skin begins to get lighter. Even when the skin appears to be completely depigmented, there may be a few residual melanocytes in the reservoir. This is why, for many people, the first sign that a vitiligo treatment is working may be a small freckle of (pigment) color that appears on the skin at the hair follicle.

    However, if the attack on the melanocytes does not stop on its own, or is not treated, it can continue until the melanocyte reservoir in some of the hair follicles is empty. Once that happens, the hair coming from that hair follicle will likely also lose color.

    The good news is that although it is more difficult to regain the color once the hair has turned white, it is not impossible. Many have found that with determination and perseverance, treatment will indeed return color to the both the skin and the hair.

 


 

Q. Does starting treatment right away when my vitiligo starts spreading make any difference?

  1. Although a person can regain pigment even after many years of not treating, generally speaking, the earlier vitiligo treatment begins, the more successful it will be. Because the new pigment will come from the hair follicle, this is especially true in areas like feet and hands that have fewer hair follicles.

Back to Top

 

Medical News Updates

Highlights of recently-published medical
articles on vitiligo and its treatments


Preliminary Scenesse:  First Phase Results Look Promising
For Combination Therapy For Vitiligo

Scenesse (known generically as afamelanotide) is a brand name drug being tested in combination with narrowband UVB (NB-UVB) in treating vitiligo. The hope is that Scenesse® will accelerate narrowband’s ability to repigment vitiligo. Recently-released results of a six-month, Phase IIa US trial of the drug seem to confirm this outcome.

According to Clinuvel, the company that manufactures Scenesse, 41 out of 54 patients with vitiligo completed the trial; 13 patients dropped out due to their inability to conform to the challenging treatment protocol and five due to the intensity of pigmentation. All were reported to have experienced no serious side effects and to tolerate the drug well.

The participants were split equally into two groups on a random basis: one receiving combination therapy, the other monotherapy. The combination therapy group was treated 3 times weekly with NB-UVB and, starting in the second month, received a series of 4 monthly implants containing afamelanotide followed by a final month of NB-UVB monotherapy. The monotherapy group of patients was treated with NV-UVB alone over the 6 month study period. 

The results showed that first signs of repigmentation occurred earlier in those on the combination therapy, (median 43 days versus 68 days) and those with the darkest skin complexion achieved a deeper and more complete repigmentation compared to those only being treated with NB-UVB. The participants will continue being followed for up to six months to monitor the stability of the repigmentation as well as to identify any new pigment loss.

In the words of the Clinuvel Chief Scientific Officer Dr. Dennis Wright, “The clinical significance of these observations from CUV102 is most promising. The proposed combination therapy with Scenesse enables a faster and more complete repigmentation for people with vitiligo. This has the potential to substantially reduce the current regimen of 18 months of NV-UVB treatment thrice per week…”

At this time, Clinuvel is considering a "Phase IIb" vitiligo study. After completing regulatory filings and approvals, this study phase would likely begin in Europe and Asia. Barring any unforeseen complications, they predict a "best case scenario" of 2 to 3 years before the product will be available around the world for vitiligo.

Scenesse is a linear peptide that can activate production of melanin in the skin. A physician implants it underneath the skin in the fatty area of the hip as a dissolvable implant approximately the size of a grain of rice. In the normal skin, the effects become visible approximately 2 days later as the skin darkens due to the activation of the melanin in the skin.

Clinuvel Pharmaceuticals is an Australian biopharmaceutical company focused on developing drugs for the treatment of a range of severe skin disorders. Clinuvel reports that Scenesse is available by physician’s prescription in Italy and Switzerland for treatment of erythropoietic protoporphyria (EPP) only; not for vitiligo. 

Editor’s Note: VSI would like to thank Clinuvel for their dedicated communication with VSI during this phase of the study. Their consistent briefings and updates enabled VSI to in turn keep the vitiligo community informed of the ongoing progress. We look forward to helping facilitate (the conduct) of future phases of this promising therapy.

Be sure to check VSI's Treatments and Research  page frequently for announcements of this or other vitiligo studies that are recruiting.

 


 

Study of Vitiligo Patients Finds Melanoma And
Nonmelanoma Skin Cancer Risk Lower In Vitiligo Patients

Recent genetic studies have suggested that patients with vitiligo face a lower risk from melanoma cancer. They point to autoimmunity in patients with vitiligo which may protect against melanoma development. On the other hand, in theory, the lack of protective melanin may lead to more photodamage and an increased risk of melanoma and nonmelanoma skin cancer (NMSC). Some doctors are hesitant to prescribe phototherapy or recommend sun exposure because of this potential risk. But are vitiligo patients really at risk?

Dutch researchers reporting in the British Journal of Dermatology retrospectively assessed the actual incidence of melanoma and nonmelanoma skin cancer (NMSC) of vitiligo patients against controls. The researchers analyzed 1307 mailed surveys returned by patients with nonsegmental vitiligo, who were at least 50 years old. The questions they were asked related to demographics, vitiligo characteristics, phototherapy history, skin cancer risk factors and the number of skin cancers experienced during the patient’s lifetime. Patients were asked to have a spouse or friend in the same age group fill out the questionnaire as a control; 708 controls without vitiligo responded. Skin cancers reported were confirmed by a pathology report. Reported results from controls were in line with population norms.

They found that patients with vitiligo had fewer melanomas and NMSC than the controls. They were three times less likely to develop any skin cancers than the control group even when known skin cancer risk factors such as childhood sunburn and high mole count were considered. They also found that vitiligo patients treated with phototherapy did not experience increased rates of skin cancers, even those phototherapy patients who received more than 300 treatments. The Dutch investigators suggested that the decreased risk of melanoma in vitiligo patients might be due to the anti-melanocyte autoimmunity, and is also consistent with recent studies finding that melanoma and vitiligo are genetically incompatible. They speculated that the lower rate of NMSC may be due to the decreased photodamage and the increased levels of wild-type p53 expression they observed in the keratinocytes in the skin of vitiligo patients. As p53 is a tumor suppressor protein that protects again cancer, it may protect those with vitiligo from actinic damage and keratinocyte cancer.

In summary, authors of this study, the largest of its type, concluded that patients with vitiligo are far less likely to develop melanoma and NMSC over their lifetimes than the average population, and indicate that the risk is not increased by phototherapy. They recommend prospective studies in different populations to corroborate these results.

 


 

Vitamin D Deficiency May Play Role In Vitiligo

Many autoimmune diseases such as rheumatoid arthritis, type 1 diabetes, and multiple sclerosis, have been associated with reduced vitamin D levels. Vitiligo is also an autoimmune disease that is also associated with other systemic autoimmune diseases including hypothyroidism and hyperthyroidism, adult-onset type 1 diabetes, and systemic lupus erythematosus. However, it is unknown whether vitiligo and its occurrence with other systemic autoimmune conditions is a result of reduced vitamin D levels.

Dr. Nanette Silverberg, Director of Pediatric Dermatology at St. Luke’s-Roosevelt Hospital Center and Beth Israel Medical Center, and colleagues set up a pilot study of 45 vitiligo patients, ages 2-71, to find out if there was an association between vitiligo and low vitamin D levels. None of the patients took vitamin D supplements, and were estimated to receive at most 200 IU per day from food sources. Sunscreen use (which can affect the body’s production of vitamin D from sunlight) was not considered. Of the 45 patients, 13.3 percent were found to have very low vitamin D levels (<15 ng/mL) and a greater chance of having a second autoimmune disease, including autoimmune thyroid disease (Hashimoto’s thyroiditis and Graves’ disease), lupus, alopecia areata, and inflammatory bowel disease; overall, one-third of the study group had another autoimmune disease in addition to vitiligo. Dr. Silverberg suggested very low vitamin D levels might be a good screening tool for the presence of additional autoimmune illness in vitiligo patients.

Dr. Silverberg and her colleagues also found that the frequency of lower vitamin D levels increased with the age of the patient; low levels were observed beginning at age 3 and decreased over time. The researchers observed that the decrease in levels as patients age may contribute to the development of secondary autoimmune disease.

The researchers identified the need to explore the relationship between vitamin D receptors (that are involved in a variety of biological processes, including those related to pigment formation) and vitiligo disease activity; whether increased vitamin D intake may prevent vitiligo or related autoimmune conditions in family members of vitiligo patients who may share similar genetic predisposition; and the possibility that supplementation with vitamin D might help control long-term disease activity in vitiligo.

 


 

Vitamin D Gene May Trigger Vitiligo In Chinese Individuals

Chinese researchers at the Fourth Military Medical University in Xi’an, China report in the British Journal of Dermatology that the vitamin D receptor (VDR) gene may be associated with vitiligo. These researchers suggest that this gene, which affects vitamin D production, may not be functioning normally in people with vitiligo and may be a factor for susceptibility of vitiligo. They hypothesized that gene variations might be the reason for this dysfunction.

The objective of the researchers was to identify and evaluate any association between certain VDR gene variations and vitamin D levels in those with vitiligo compared to a control group. They performed a hospital-based study of 749 patients with vitiligo and 763 matched controls, looking at four VDR gene alleles (one of 2 or more forms of a gene) and vitamin D levels to determine whether they were associated with vitiligo risk in the Chinese population.

They discovered that several specific VDR variations among these four alleles were found more often in the control group and were associated with a lower risk of vitiligo. Two of these same variations were mentioned as also relating to higher levels of vitamin D when compared to the variations found more often in those with vitiligo, seeming to show a connection between increased vitamin D levels and decreased risk of vitiligo.

Higher levels (above 18.72 ng/mL) of vitamin D were associated with a significantly lower risk for vitiligo, and the risk increased with levels below 14.95 ng/mL.

The researchers said that the results suggest that VDR variations do appear to affect VDR function and vitamin D levels, and could identify those with a predisposition to vitiligo in the Chinese population.

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Research & Clinical Trials


Clinical Trial in Massachusetts!

A phase-II, randomized, placebo-controlled trial
of simvastatin in generalized vitiligo


Principle Investigator: John E. Harris, MD, PhD

Study Location:
UMass Memorial Medical Center in Worcester, MA

A research trial at UMass is studying whether simvastatin, a common cholesterol medication, is useful in treating vitiligo. The study includes taking either this medication or a placebo and visiting UMass 8 times over a period of 6-7 months. You will be compensated for your time and receive free parking.

You may be eligible if you are a patient with vitiligo and are:

  • A male between 18 – 64 years of age
  • Not currently taking a statin medication for heart disease

If you are interested in participating or would like more detailed information:

Call: (508) 856-2800 or   Email: UMassVitiligoStudy@gmail.com

 


 

Major Expansion of Vitiligo Genetics Project

University of Colorado
Health School of Medicine

Update!

International Study to Find Vitiligo Genes

Additional Patient Volunteers Needed
From the USA and Canada

Scientists with the international VitGene Consortium project spanning 18 countries are working to understand the biology of vitiligo so that more effective vitiligo treatments can be designed. Thanks to your involvement, the first phase of this research project has been very successful, discovering many vitiligo genes, resulting in real breakthroughs in our understanding and opening new doors to developing potential new treatments.

We now plan to expand these studies to discover additional vitiligo genes, giving us even more targets for treatment. That means we need to double the number of patients. Our new goal is to enroll 3000 additional Caucasian (white) vitiligo patients over the next two years. Your help is essential.

If you are from the USA or Canada and have not previously taken part, your participation is vitally needed. Please complete the questionnaire below then email directly to Dr. Richard Spritz at the University of Colorado School of Medicine using the email address provided at the end of the questionnaire.

Your personal information, by law,
will be kept private and will not be sold or disclosed
.


Join with us to work for a vitiligo-free future!

Click here to download the questionnaire

Click Here to Read Research Updates on this Study

 


Patients and Controls Invited to
Participate in Online Vitiligo Survey

 

Sponsored by Nanette B. Silverberg, MD

Departments of Dermatology,
St. Luke's-Roosevelt and Beth Israel Medical Centers, New York, NY

Dr. Silverberg is conducting a survey to review medical, genetic,
psychological and nutritional factors that may cause or exacerbate vitiligo.

  • Individuals with vitiligo that have been previously diagnosed
    by a physician are welcome to contribute to this survey.
  • Friends and family without vitiligo are also encouraged to
    respond as control subjects. Just answer the questions that are applicable.
  • The survey will not include any personal information that may
    identify you to the public.

Click Link to Select the Appropriate Survey Below

Participate in this Survey as an Adult with Vitiligo

Adult Vitiligo Survey

OR

Participate in this Survey For Your Child

Survey For Your Child


 


 

Earn Funding for VSI 3 Ways When You Shop!

Please keep VSI in mind when you do any of your online shopping


AMAZON SHOPPING

Amazon.com has all kinds of items in addition to books. As long as shopping is done through this link, Amazon.com, or from the Amazon box on our Community Home Page, VSI will earn fees, based on a percentage of the sale*. The more items members buy, the higher the percentage! Our Vitiligo Library and Store, containing books, articles and products for those with vitiligo, is also powered by Amazon.

iGIVE SHOPPING

iGive.com is another program with an online shopping mall with over 700 stores where you can shop and earn VSI a percentage. Let friends and family know about iGive so they can support VSI, too. You do have to register for iGive. Once you've registered, you can either shop directly through their "mall" on iGive's website or by downloading their new button, which makes it even easier. iGive also has a search function powered by Yahoo at isearchigive.com (or through the button) that earns VSI a penny per search. The power of numbers makes this also an effective way to support VSI.

GOODSEARCH SHOPPING

GoodSearch and Goodshop are similar to iGive. Goodshop has some different stores (like Target), though, and also offers coupons and often a higher percentage to VSI. Goodsearch also offers a toolbar. Through another affiliate, GoodDining, participating restaurants offer VSI a percentage of your meal purchases. If you provide reviews of the restaurants afterwards, we earn even more!

* Vitiligo Support International Inc., (VSI) is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.

 

Support Vitiligo Education and Stay Connected!

There is no other source available that offers the comprehensive vitiligo education and patient support that VSI does. We are asked to respond in many ways to those who come to us for guidance, information and support. As we depend on donations from the public to meet these demands, your gift is critically needed.

Become a Supporting Member: Click Here
Make a General Donation Through VSI: Click Here
Make a General Donation with PayPal.

 

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