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Message From the Executive Director
Dear Members and Friends of VSI,
I'd like to personally thank each of you who have taken time to correspond with us in recent weeks. We always appreciate positive feedback, as it lets us know we are moving in the right direction. Our site traffic (visitors to the website) has increased considerably, with our January 2010 site visitors being nearly triple the number of January 2009! Many more of you have joined at the Supporting Level, which has meant our contributions are holding steady despite the economy.
Thanks also to those who have written expressing concern over our recent forum posting changes. Your questions made us realize we need to do a better job explaining the full scope of our organization.
VSI serves a very large vitiligo community and we are gratified that we had over 400,000 visitors in 2009; however, we are much more than a web site, so we would like to take this opportunity to share with you a bit of that which goes on "behind the scenes."
VSI is a national nonprofit organization whose mission is to improve the lives of the vitiligo community through a range of services.
In addition to our website, we provide the following services:
We hope you will understand that in order to continue these unique services during such challenging economic times, we must make tough financial decisions. We need the continued help, and understanding, of the vitiligo community and we thank all of you who support VSI as Supporting Members. If you are not a Supporting Member at this time, I hope you will consider becoming one.
A New Look for VSI!
VSI is proud to announce exciting changes coming this spring, as we prepare to launch our new website. The new design will incorporate features based on careful research as well as suggestions from many of you.
The overall concept is not only to provide accurate educational material and patient support, but to make it easier to access. Functions such as creating or renewing accounts or locating your personal account information will be more streamlined and logical. We will now have a "Site Wide Search" function available so that you can easily locate information on any topic, even if it's in an archived newsletter. These and other enhancements are being implemented with you, the user, in mind.
With a growing number of people coming to VSI for information and support, these improvements became an urgent priority. Careful consideration indicated this investment to be vital at this time if we were to maintain our commitment to meet the ongoing needs of the vitiligo community.
Donations from the vitiligo community made this upgrade possible. We thank you, our supporting members and corporate donors for your support upon which our programs depend. You are VSI!
Our programs are made possible through members like you.
Are You at Risk for Thyroid Disease?
Thyroid disease, especially Hashimoto's Thyroiditis, is common in vitiligo patients, with vitiligo generally appearing around the same time as, or before, the onset of thyroid disease. As a result, it is important that everyone with vitiligo be alert to this risk and take appropriate steps to monitor their thyroid health. Parents need to be especially aware that children with vitiligo are particularly vulnerable as studies show an even higher incidence of thyroid disease among this young population. Some studies also show that young women with vitiligo also may be more vulnerable to thyroid disease.
So what does this mean for your health or your child's health and what can you do to minimize this risk?
What is the thyroid?
The thyroid gland is a small butterfly-shaped organ that lies flat across your windpipe. It produces hormones that affect the body's metabolism, including heart rate, the rate of energy use, and growth.
What happens when the thyroid is not working properly?
Thyroid disease can speed up or retard the thyroid's hormone production which can cause a variety of physical problems.
How can you minimize the risk of thyroid disease?
You should discuss with your doctor as to whether a screening for thyroid disease might be appropriate for you or your child. There are several tests that are used to evaluate the blood levels of the various hormones produced by the thyroid.
One such test which looks for anti-thyroid peroxidase antibodies (anti-TPO) can indicate thyroid problems before symptoms appear. These antibodies have been found in above-normal amounts in vitiligo patients, especially in young women, when compared with control groups. As this antibody is a relatively sensitive and specific marker of autoimmune thyroid disorders including Hashimoto thyroiditis and Graves' disease, and considering the fact that vitiligo usually precedes the onset of thyroid dysfunction, periodic follow up of vitiligo patients, especially young women, for detecting thyroid diseases is recommended.
How is vitiligo related to thyroid disease? Click here
Vitamin D: What You Need To Know
We have heard much about how important Vitamin D is to our long-term bone health. We know that when we don't have enough of it in our bodies, we can develop rickets and osteoporosis. Researchers now believe that vitamin D may also maintain the health of other 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.
All of us need to be sure that we have adequate levels of vitamin D in our bodies to protect our health. Most North Americans have been found to have insufficient levels of vitamin D, but many of us are not aware that we are facing an avoidable risk for disease. For people genetically predisposed to an autoimmune disease like vitiligo, this risk could be even greater if vitamin D insufficiency can trigger autoimmune disease.
What is Vitamin D?
Vitamin D is actually a hormone predominantly made by the action of ultraviolet light on the skin, and maintains normal production levels of calcium and phosphorus. It is most well-known for aiding in the absorption of calcium helping to form and maintain strong bones.
Vitamin D has been also shown to have some anti-inflammatory and immune-modulating properties that may benefit certain autoimmune disorders which have been linked to low vitamin D levels.
Vitamin D has several forms, but the form of greatest importance to humans is vitamin D3, which is synthesized in the skin when it is exposed to sunlight. Sunlight is the greatest source of vitamin D for humans. About 90% of the required vitamin D is synthesized by the body from the effect of the UVB rays on the skin. The remaining 10% comes from food. However, very few foods in nature contain vitamin D.
How can I maintain adequate levels of vitamin D?
Historically, our requirements for vitamin D were satisfied by daily exposure to sunlight and/or daily intake from food. However, our indoor lifestyle, increased use of sunscreens, and altered diet has made it more difficult to maintain adequate levels of vitamin D. Most people today only get about 1,000 units a day from sun exposure, 3,000 units below the required 4,000 units.
For the average person, a single 20 minute exposure to summer sun will trigger delivery of 20,000 international units (IU) of vitamin D within 48 hours. (Darker-skin would require more exposure to synthesize the same amount of vitamin D). The 20,000 units provide a ready reserve of vitamin D. Once these reserves are achieved, the skin limits the production of vitamin D when exposed to subsequent amounts of sunlight. The body simply stops accumulating it when a sufficient amount has been stored.
If one cannot get enough sun exposure, vitamin D supplements provide a good alternative source of vitamin D, although some people with certain conditions should not use vitamin D supplements at all without guidance from a physician, such as: primary parahyperthyroidism, sarcoidosis, the presence of kidney stones, unexplained hypercalcemia, renal insufficiency or kidney failure.
For others, daily supplement doses of up to 2,000 units (less with a child) are generally considered sufficient. However, short-term periods of higher doses appear to be safe, and new recommendations are expected later this year. If one is over 35, a daily dose of 4,000 units may be recommended, especially if there is a family history of osteopenia and osteoporosis. Although vitamin D toxicity is rare even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics.
Vitamin D3, also known as cholecalciferol, is the only form of vitamin D supplement that should be taken, as it is the only one naturally occurring in the body.
Who is at greater risk for low levels of vitamin D?
Factors that include the risk for vitamin D deficiency include:
How do I know if I have a sufficient level of vitamin D?
A simple blood test for 25-hydroxyvitamin D, also called a 25(OH)D, will provide your vitamin D level. While opinions vary as to what the optimal level should be, the Vitamin D Council recommends an optimal level of 50-80 ng/ml. They found that the body does not reliably begin storing cholecalciferol in fat and muscle until 25(OH)D levels get above 50 ng/ml. The average person begins to store cholecalciferol at 40 ng/ml, but at 50 ng/ml virtually everyone begins to store it for future use. That is, at levels below 50 ng/ml, the body uses up vitamin D as fast as it's made or taken.
Is there a link between vitamin D and vitiligo?
Deficiency in vitamin D has been widely regarded by researchers as an environmental trigger for many autoimmune diseases; they theorize vitamin D deficiency could not only trigger the onset of an autoimmune disorder, but also cause the disease to worsen. This would suggest that people with vitiligo should discuss with their physician the possible benefits of maintaining adequate levels of vitamin D as part of managing their disease.
An additional study has further raised a possible connection between vitiligo and vitamin D. This study found a village in Romania where many families with vitiligo and other autoimmune diseases have a genetic abnormality in a vitamin D receptor gene.
Based on the generally-held view that vitamin D insufficiency is a contributing factor in many autoimmune diseases, it appears there is mounting evidence to support the necessity of taking extra vitamin D. Because each person is different and has unique needs, if you have concerns about your vitamin D level, consult your physician.
VSI Attends Largest Annual Meeting of Dermatologists
VSI's Executive Director, Jackie Gardner, attended the American Academy of Dermatology (AAD) 68th Annual Meeting in Miami, FL from March 5-8. With over 19,000 dermatologists, residents, pharmaceutical and skin care specialists and 350 exhibitors in attendance this year, Gardner stayed busy attending dermatology meetings, helping staff the Coalition of Skin Diseases booth, attending vitiligo forums and speaking with dermatologists, scientists and researchers on the needs, concerns and future of those with vitiligo. She also canvassed the exhibit hall learning more about new products that could be helpful for vitiligo patients, and meeting with company executives, educating them on the needs of vitiligo patients. Gardner made time to personally visit each VSI sponsor in attendance.
RESEARCH & CLINICAL TRIALS
Vitiligo Genetic Study Seeking Patient Volunteers
The international VitGene consortium project, aiming to identify susceptibility genes for generalized vitiligo, is the largest vitiligo research study ever undertaken. Funded by a major grant from the U.S. National Institutes of Health, this "genome-wide association" study offers the best hope to discover the true biology underlying vitiligo, and thus to open up paths to new and better treatments and even approaches to the prevention of the disease altogether.
While Phases 1 and 2 of the study are now basically complete, they are now planning to extend these Phases, so as to increase statistical power of the study to identify additional important genes that may have been missed in the first analysis. Therefore, they continue to collect additional Caucasian patient, family, and control samples to expand the number of participants in order to improve and extend the analyses. If you have not yet participated, it is not too late.
Phase 3, which extends the studies to non-Caucasian groups, is ongoing, and they are still recruiting minority non-Caucasian groups, including USA and Colombia Hispanic/Latinos, African-Americans and Nigerian blacks, middle-eastern Arabs, Indians and Pakistanis, and Asians.
Currently, VitGene includes 18 countries (USA, Canada, Colombia, UK, Belgium, Holland, France, Italy, Spain, Germany, Jordan, Saudi Arabia, Bahrein, Nigeria, Pakistan, Japan, S. Korea, and Taiwan), with additional sites being considered.
If you have not participated, I encourage you to do so here and now, but please, just one questionnaire per family. This costs nothing and you can participate without leaving your home. Click here to Participate. (You must save this to your local computer to fill out, and return via mail (address provided on the questionnaire) or email to [email protected].
YOU MUST PROVIDE FULL CONTACT INFORMATION, INCLUDING NAME, EMAIL, MAILING ADDRESS, AND TELEPHONE NUMBER. IF WE CANNOT CONTACT YOU, YOUR QUESTIONNAIRE IS USELESS.
Vitiligo Skin Pigment Cell Transplantation Study
W. Lim, M.D., Professor and Director
Multicultural Dermatology Center, Henry Ford Hospital
Individuals with vitiligo develop milk-white patches of skin due to loss of the skin pigment cells (melanocytes) in these areas. Skin transplantation can be a very effective treatment option for vitiligo patients with stable disease who have not experienced success from light treatments or application of medicated creams. One particular skin transplantation technique, the melanocyte-keratinocyte transplantation procedure (MKTP) has been used successfully in Sweden, India and Saudi Arabia for more than 13 years.
In the MKTP, melanocytes are taken from a person's normal skin, made into a gel, and then transferred to the vitiligo patches. The melanocytes grow and multiply in this new location and the skin color is restored. Because a gel is transferred instead of a piece of skin, as is done in many other skin transplantation procedures, this procedure can be performed on an outpatient basis and patients can resume most normal activities immediately after the procedure.
We are performing this procedure in the Henry Ford Hospital (HFH) Dermatology Clinic in a clinical trial in order to see if we can achieve the same success that has been experienced in other parts of the world using this technique. We have performed 15 procedures so far and early results are encouraging. This procedure is only appropriate for patients whose vitiligo has not worsened in the past six months. People who develop vitiligo or thick scars (keloids) on parts of the skin which are scratched or cut should not undergo this procedure. Study participants would have to be able to come to the HFH dermatology clinic in Detroit, Michigan 8 times in 7 months. Further study requirements can be discussed by contacting the study doctors.
For more information please contact Dr. Marsha Henderson at 313-916-6964 or [email protected]
Vitiligo World Congress
September 23- 25, Milan Italy
San Raffaele Scientific Institute
UPDATE! In our Winter Newsletter, VSI reported on the upcoming "Vitiligo World Congress," explaining that the first 2 days of the meeting were for clinicians and scientists, and the final day, September 25, was for patients. Apparently, after our newsletter went out they received so many requests that the Scientific Committee has decided to also extend the invitation to the Scientific Sessions on September 23rd and 24th to vitiligo patients!
The registration cost is � 168,00 (VAT included) and covers:
What's On Your Mind ?
If you wanted to wear them at the same time, you would definitely need to apply the Protopic first, on clean, dry skin and wear it for 15 -30 minutes to allow time for the active ingredients to enter the skin before applying the makeup.
Because you really only need to wear the Protopic 15-30 minutes for the active ingredients (not the petroleum base) to be absorbed into the skin, after that time you can either wipe or wash off the residual ointment and proceed with your day as you normally would.
The brand name product known as "Benoquin" is no longer being made, but any compounding pharmacy should be able to make the more commonly known generic "Monobenzone" prescription for you. Your doctor will need to specify the strength, which ranges from 10% to 40%. For a list of compounding pharmacies making Monobenzone, log on to your VSI account and go to the "Depigmentation Overview" in the Depigmentation Forum. (Can't remember your login information? See note in the left column!)
When depigmenting, lips are often the first area of the face to fully depigment, and tend to be a light pink color when depigmented, so depending upon the original color of your skin, it may or may not be obvious that your lips are depigmenting or depigmented. For those with darker skin, depigmenting lips are more obvious against the former darker color. Those with lighter skin may not notice a difference. See the Photos
People with vitiligo may have some pigment abnormalities in their retinas (the inner layer of the eye that contains light-sensitive cells) and some variation of color in their irises (the colored part of the eye). In some cases, there is some inflammation of the retina or iris, but vision is usually not affected.
Earn funding for VSI when you Shop!
Please keep VSI in mind when you do any of your online 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, Amazon returns a portion of the sale to VSI. The more items members buy, the higher the percentage!
Our Vitiligo Library and Store is also powered by Amazon. It contains books, articles and products for those with vitiligo.
Our other program is iGive.com. The iGive shopping mall has over 700 stores where you can shop and VSI gets 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 toolbar, which makes it even easier. iGive also has a search function powered by Yahoo at isearchigive.com that earns VSI a penny per search. The power of numbers makes this also an effective way to support VSI.
We also hope you will consider participating in a Charity Walk for VSI. All you do is send sponsor forms to your friends, pick a date and time convenient for you, and walk!
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