Message From the Executive Director
Dear Members and Friends of VSI,
While many people look forward to sharing fun times with family and friends in the summer, the opposite can be true for those with vitiligo. In an effort to disguise pigment loss, even in the heat of the summer, many subject themselves to long sleeves and/or long pants, high-necked shirts, and footwear that covers the entire foot and ankle. Others altogether forego outdoor activities they once loved.
Having been diagnosed with vitiligo over 25 years ago, while I am still acutely aware of my skin, I have come a long way in accepting and coping with this disease. Though I may no longer arrange my daily activities around vitiligo, it still impacts my everyday life.
What does that mean? In the early years, vitiligo not only affected my daily life, but it affected my family as well. I was no longer comfortable with my children inviting friends for sleepovers unless my husband could take care of their breakfast in the morning before I had a chance to tediously apply adequate cover-up. I no longer volunteered for early shifts in my children’s schools. For a time, I even avoided restaurants or stores where I might see someone I knew. Vitiligo was definitely in charge of my life in those days, and thankfully, that is no longer the case.
There are still situations that affect my decisions and activities, but more from a planning standpoint rather than avoidance. The way I look at it, the extra time it might take me to use my light (treatment) and/or apply extra cosmetics, is not so different than the extra time it might take for a diabetic to test sugar levels and take medications, or for an asthmatic to take breathing treatments. I can handle it - I just have to prepare.
I do not want to, in any way, dismiss or minimize the emotional impact of this disease. But for anyone reading this who is in that dark place, I want you to know that it does get better. Not unlike so many other diseases, living with vitiligo just means developing strategies to adapt to the new situation.
It can be difficult for others to understand what you’re feeling. That’s not their fault. I wish I had a nickel for every time someone said “I don’t even see it,” or, “it’s what’s on the inside that counts.” I know - RIGHT? Even if those words don’t help, it’s important to remember that they, too, are struggling, and just want to help. Sharing your feelings with others can be very healing for you, as well as helping those around you have a better understanding of what you are going through. This also helps you establish a support system of people you can count on when you’re down.
VSI is here to provide the education and support needed to empower each of you with the tools you need to take back your life. Our community forums are available to share experiences and coping strategies, and we partner with an incredible network of the world’s foremost vitiligo experts enabling us to bring you the most up-to-date information available.
The bottom line is, you have to be comfortable in your own skin. It’s a process, and VSI is here to help. Let us do the heavy lifting. All we ask in return is your support to sustain our efforts. If you are not a Supporting Member, please consider becoming one today - help us help you.
Exciting Times For Vitiligo!
In the Past Few Weeks:
ABC News National TV Show
What’s On Your Mind Aired A
Segment On Vitiligo Discrimination
||Thanks to the Support of the
VR Foundation, “World Vitiligo Day” was Celebrated Across the World
We Saw the News About a
Rheumatoid Arthritis Drug Showing
Great Promise as a Vitiligo Treatment!
We’ve come so far – yet we clearly have far to go.
VSI has led a wide range of initiatives to increase education, awareness and support. We have fought to change the way vitiligo is addressed by the insurance industry and ensure that patients have access to care from needed specialists.
Although VSI has made great progress, the organization now finds itself at a critical threshold. It lacks the financial resources needed to strengthen the organizational infrastructure, maintain staff, increase programs for members, and continue to raise awareness of vitiligo. We need your help to move the organization over this threshold and to the next level.
2015 Funding and Leadership Campaign
Late last year, VSI announced a multi-initiative “Call to Action.”
The primary goals, of equal importance, were to:
- Galvanize the vitiligo community
- Establish unified support of VSI’s organizational efforts
- Significantly increase funding to strengthen and
expand much needed services
The response to this campaign has been quite positive, and the momentum continues to grow. We have prepared a mid-year report to thank those who have already stepped up and joined this critically important campaign. Please – Help Us Help You!
Mid-Year Campaign Results Are In!
Click Here To View
To Learn More About How VSI Uses Your Contributions: Click Here
Show Your Support Today and
Be Included in VSI’s Year-End Report!
This organization is a Silver-level GuideStar Exchange
participant, demonstrating its commitment to transparency.
The PanAmerican Society of Pigment Cell Research (PASPCR) will be offering a unique meeting opportunity this year. In advance of their 2015 Scientific Conference Advances in Vitiligo Research and Care, and in collaboration with the Vitiligo Working Group and Vitiligo Support International, they are holding a “Vitiligo Pre-Meeting” designed to bring vitiligo patients, their doctors, and researchers who specialize in vitiligo together in one place.
When and Where?
Saturday, September 26, 2015 - 7:00 p.m.
Optional Dinner and Social at Dave and Busters
Food and drink expenses for this social event are not covered by the conference registration fees; however, we must have an accurate headcount for the restaurant reservation, so those wishing to participate need to indicate their attendance on the conference registration (under Vitiligo Social self-pay).
Sunday September 27, 2015:
“Vitiligo Pre-Meeting” Conference at the Doubletree Hotel in Orange, CA
8:00 a.m. - Breakfast
9:00 a.m. - Program begins
12:00 - 1:00 - Lunch with Speakers
1:00 p.m. - Poster Exhibits and Discussion -
Open Microphone - Questions and Answers
2:00 p.m. - Program concludes
John Harris MD, PhD - Chemical-Induced Vitiligo And Vitiligo Treatments
You might have noticed Dr. Harris’s name in the news recently regarding his research into JAK inhibitors as a treatment for vitiligo. You can read more about that below in this newsletter!
Pearl Grimes, MD - Vitiligo in Children
Amit Pandya, MD - Cost and Insurance Coverage for Treatment
Caroline LePoole, PhD - Modified Protein Returns Pigment to Mice with Vitiligo
Click Here to see a previous VSI article on this topic.
Richard Spritz, MD – Vitiligo Genome-Wide Study
Reported on many times by VSI - including in this newsletter!
How much is it?
The registration is only $80, thanks to conference grants from the Vitiligo Working Group and UC Irvine Dermatology. The fee includes breakfast and lunch, along with the presentations and discussion by experts in vitiligo research and treatment. Since seating is limited, we suggest that you sign up as soon as possible.
If I have extra time, is there anything fun to do in Orange, CA?
Disneyland is just 2 miles away, and the Doubletree offers free Shuttle service to the park. You can also order and print Disneyland tickets online from the Doubletree website: Click Here for Ticket Info.
The Shopping Outlets at Orange, with more than 100 restaurants and shops, are next to the hotel. For a Store Directory: Click Here. Many other activities are also available in the area, from beaches to Universal Studios, which is less than 40 miles away.
For Additional Information or to Register: Click Here.
Please read through all the information on the page, as it will give further instructions on how to register (the Vitiligo Pre-Meeting is the conference). Discounted hotel rooms are also available, and you can register for those on the site as well.
After registering, you should receive a registration confirmation from Ruth Schweitzer. If you do not receive a confirmation, please report the problem to this email address: firstname.lastname@example.org.
* Subject to change
Tips for Vitiligo
Many people with vitiligo feel more confident in public when they cover their uneven skin tone with some type of camouflage or corrective make-up. This is especially true during the summer months when the weather is warm, less clothing is needed, and there are so many opportunities to participate in outdoor activities.
Over the years, the many improvements made to corrective cosmetics have provided the capability for much more natural-appearing coverage, and in some cases, making the depigmented areas almost undetectable.
We thought it would be helpful to provide an update on some of the different types of products on the market, along with a few tips on application techniques. The product names and/or images included in this article are for informational purposes only, and are not intended as recommendations or endorsement. You can find additional products by checking online or at local department or drug stores.
Corrective Cosmetic Creams
Commercial corrective cosmetic creams, concealers, and foundations contain more pigment than ordinary cosmetics, enabling them to more adequately conceal skin irregularities such as vitiligo. In the past, these products were very limited in colors and were primarily used on the face. However, in addition to many new formulas and shades for the face, some companies now offer additional “Leg and Body” formulas for other areas of the body.
Commercial Product Examples:
Dermablend Cover Crème
Dermablend Leg and Body Cover
Jane Iredale Disappear Concealer
Before you make a purchase:
Find product locally: Try to locate products in a local department store make-up counter or in beauty product stores (like Ulta, for example) so that you can experiment with colors before purchasing.
Call first: Many department stores keep these products under the counter and only bring them out upon request. To avoid having to go from counter-to-counter in search of a particular product, it could save time to call the store in advance and check with the different make-up counters to see which one carries the product you are looking for, and ask for a time when an employee will be working at that counter.
Companion products: Look for recommended companion products such as setting powders or sprays, and/or application brushes, etc.
Ask about experience: Many times, employees are not well trained in application techniques for vitiligo. You do not have to try it on in the store, but if you opt for a demonstration and are not pleased with the results, don’t let that discourage you.
Ask for samples: Department store make-up counters have small sample containers under the counter. It may be easier to ask for samples of a few different shades to take home and experiment with. Beauty product stores will often have test samples available for you to try yourself while in the store. Many people find that their best color match is obtained by blending two (or more) shades. Also ask about samples for companion products such as setting powders.
Order samples: If you are not comfortable going to a public make-up counter, shop online. Most companies sell inexpensive “sample sets” that provide a variety of shades that you can experiment with in the privacy of your own home before ordering/purchasing a full container.
Reduce contrast: Apply corrective cream over a stain or other product used to reduce contrast.
Read online reviews: Read other experiences and suggestions before purchasing.
One of the most inexpensive and accessible products would be the homemade stain so often discussed on VSI’s message boards. Though this product definitely has its limitations, it can be used in various ways - from being used alone to cover small areas on the hands, arms, feet, legs etc., or in combination with a commercial product by applying it to the skin as a base to reduce the contrasting color, then covering with other make-up.
1 – 4 pack of water based food coloring
1- small (1 or 2 oz.) bottle (can get at a pharmacy)
Few ounces of rubbing alcohol
Flocked tip applicator, or
Cotton swabs (like for cosmetics or ears)*
*If using cotton swabs the type with paper sticks work best.
The plastic stick variety stays too wet and sloppy to properly apply.
You begin with an ordinary 4 pack of liquid food coloring that can be found in most any grocery store baking aisle for a couple of dollars, or for less at a dollar store. The back of the box typically provides recipes for basic colors. Using the recipe on the back of the box for the color brown is a good starting place, but expect to have a fair amount of mixing and matching to get an acceptable shade.
Start by squeezing the drops noted for the brown recipe (multiply the recipe by 5 or 6 times) into a small bottle. After that, dilute the concentrate with a half teaspoon or so of rubbing alcohol. At that point, you can try a tiny bit with the applicator. Always drag the applicator or cotton swab across the side of the bottle several times to remove excess stain. The more solution you have on the applicator, the darker it will be on the skin. Keep in mind the recipe on the box is very basic. The color of your skin may require a color not included in the original recipe. As you apply, use as little as possible. If it’s too dark, add more rubbing alcohol. If it's too red or orange, add more blue or green. If it's too green, add more red or yellow, etc. If it gets a little too dark during this process, add another small amount of rubbing alcohol. Everyone’s skin tone is different, and can even vary (lighter or darker) on different areas of the body. There is no exact recipe or right way or wrong way. You just have to experiment until you get a color that works.
Best body areas for use: Face (particularly as a base used under a corrective cream), hands, neck, chest, legs
Where to purchase:
Flocked tip applicators can be purchased online very inexpensively, and cotton swabs are readily available in stores.
Food coloring is available in most grocery store baking aisles.
Dihydroxyacetone (DHA) and Sunless Tanners
DHA is a sugar which interacts with the dead surface cells in the outermost layer of the skin to temporarily darken skin color. The coloring doesn't wash off, but gradually fades as the dead skin cells slough off. In most cases, the color is gone after five to seven days.
Many people shy away from the sunless tanning products because of the reputation they had in the early days for producing a very unnatural orange color. However, many advances in recent years have not only reduced the orange, but have added multiple shades and colors.
Sunless tanners come in many different formulations such as lotions, gels, liquids, sprays, mousses, and wipes, and can be purchased in drug stores, big box stores, and online. Spray tanning businesses have also become very popular and offer a full body spray in a tanning booth.
DHA products are no longer “one-color-fits-all.” The DHA concentration of commercial products can range from 2.5 to 10% or more, but most fall within the 3-5% range. The higher the percentage of DHA, the darker the color it will produce. Some of the labels make it difficult to know exactly how light or dark the product will actually look on your skin, but terms such as “fair” or “light to medium” generally produce a lighter color and terms like “deep” or “dark” are darker.
Though most of these sunless tanning products are marketed to the public rather than as corrective products for skin conditions, there are application “tips and tricks” that with a little practice can be used to more successfully cover vitiligo.
Always begin by carefully reading the label! This will help you learn if the product is a lighter or darker shade, if it has any immediate color or tint, how quickly the DHA color will develop, how long the color will last, if it produces a shimmery look that will make your skin glisten, and precautions such as not inhaling or the need to cover fingernails.
Blending: The art of blending will be an ongoing process. If you are using a spray to cover a larger area, do not worry too much about precision. You’ll want to apply extra to the depigmented area, but you want that area to eventually blend into the pigmented area, so overlap is ok. The same is true of the gels and lotions. After applying the product to the depigmented area, try to “feather it” outward so as not to leave a stark line of demarcation.
Drying: Different products suggest different drying times. Many people use a hair dryer after applying to help set the product. If using a spray tanner, you might want to use a lower power setting on the dryer so you do not risk creating ripples or streaks from blowing the wet spray. Lotions and gels seem to stay a bit tacky even after the recommended drying time. If using a lotion or gel at night you might want to apply a couple of hours before bedtime to be certain it is well set.
Be patient: Allow adequate time for DHA to develop before applying another coat, especially on obvious places like the face or hands.
Camouflage: As mentioned above, reducing the contrast between the pigmented and depigmented areas is the key to the successfully blending. This can be achieved in various ways, but with the sunless tanners, you basically apply an extra or heavier coat over the lighter area.
Exfoliate: The DHA chemical works on the top layer, which is dead skin. Areas of thicker, rougher skin such as the knees, hands, elbows, and ankles may absorb more of the tanning solution, resulting in a darker, uneven color. For best results, exfoliation is recommended prior to applying self-tanner to evenly remove as much of the dead skin as possible.
Which exfoliating product? Research indicates that the melanocytes of those with vitiligo are inherently fragile, making them more susceptible to cell death from chemicals or minor skin trauma. Many self-tanners mention chemical exfoliates with ingredients such as salicylic acid, AHAs (alpha hydroxyl acids) or BHAs (beta hydroxyl acids) or “Scrub-free Exfoliating Pads” containing the same (previously listed) ingredients. Various physical-exfoliating products like brushes and pads are also available.
Chemical exfoliates: Use at your own risk.
Dr. Nanette Silverberg says the above mentioned chemical exfoliates should be ok to use in products with low concentrations. But it can be difficult to know or find the level of concentration in a product.
Other possible side effect: The FDA warns that “care should be taken when using AHAs after an industry-sponsored study found that they can increase photosensitivity to the sun.”
Exfoliating Loofah, Gloves or Mitt. Another option is one of the exfoliating products used to scrub your skin. As long as it is not too abrasive this should be safe to use, but Dr. Silverberg reminds us that “extensive scrubbing may Koebnerize vitiligo and is NOT advised.”
Experiment: Until you know how a product will look on your skin, it might be a good idea to experiment on a less obvious area that will be covered by clothing. This will be especially true of reapplication times for additional coats. Some products will develop more quickly than others. If you accidently reapply too soon, resulting in a much darker color than anticipated, no one else has to know!
Moisturize: Keeping your skin hydrated with lotions helps prevent premature drying and will help extend the life of the tan.
Beware-Take Care! You never want to get the tanning product on the palms of the hands or soles of the feet. If applying a gel or lotion, you can wear gloves until you finish the rest of the body, then remove them to apply to the tops of the hands. It’s also a good idea to have a damp cloth on hand so you can go back and wipe around the bottom edge (around the soles) of your feet, the palms of your hands, and between your fingers. If using a spray, you will also want to wipe off the fingernails so they do not turn orange.
Patch Test: If you are using a product for the first time, it might be a good idea to use it on a small, sensitive area, such as the inside of your arm or on your stomach, then wait 24 hours to be sure you are not allergic to any of the ingredients.
What Type of Product to Use: If the depigmented area is greater than a few inches, you might try a product with broader coverage capability such as a spray, gel, or lotion. However, if the depigmented area is smaller, and particularly if it is in a very obvious location (like the face or hands), you may benefit from a product capable of a more precise application, such as Chromelin Complexion Blender. This is a concentrated liquid DHA product, and one of very few specifically developed for skin conditions like vitiligo. It is applied with a small applicator directly to the affected area. After applying the Chromelin, you can then coat the entire area with a DHA spray or lotion. It may take some trial and error to accomplish blending the two areas; just keep in mind that the DHA in different products may produce different shades and develop at different rates.
Bronzer: Bronzers typically are makeup-type products that produce instant, but temporary color that can be washed off at the end of the day. Some examples are tinted moisturizers and brush-on powders, and they may use the terms “instant tan” or “tint” in addition to “bronzer.” Sometimes these products are combined in the same product with DHA, (check the label) giving you a level of instant coverage to provide extra camouflage, in addition to the color that develops over time and lasts several days. This can be particularly helpful for covering vitiligo. You can apply the tinted formula to the depigmented area either alone, if it matches the surrounding skin, or as a base using a heavier or repeated application to the lighter skin, then cover the entire area afterwards to blend together.
Another benefit of the combination products is that the instant color allows you to see exactly where you are applying, and may help reduce missed areas, streaks and over-application. Always check labels and ingredients to see exactly what the product you are using contains.
Exfoliate: To remove dead skin cells from the skin's outermost surface.
Self-Tanning Moisturizer: These have a lower concentration of DHA and provide just a hint of color.
Shimmer: Labels that use words like “shimmer” or “iridescent” generally mean the product leaves a glittery appearance on the skin. This may work better for some than others. It may be more difficult to convince others that your color is natural if you’re shimmering like a fairy.
Commercial Product Examples
Self-Tanning Moisturizer: Jergens Natural Glow Daily Moisturizer
Sunless Tanning Spray: L’Oreal Sublime Bronze Self-Tanning Mist
(does not contain a bronzer)
Tinted Self-Tanning Lotion: L’Oreal Sublime Bronze Tinted Self-Tanning Lotion (label mentions “Instant Shimmer” which means it will have a glittery appearance)
Gel: Sublime Bronze Self-Tanning Gelee
(does not contain a bronzer – does not mention shimmer)
Combination DHA and Bronzer:
St. Tropez Self Tan Bronzing Mousse – Available in Light and Dark Bronzing
PretendTan – Darker Bronzer
St. Moriz Instant Self-Tanning Mousse -- Available in multiple shades
Liquid DHA with Applicator:
Chromelin Complexion Blender
The FDA has approved DHA for external use only and advises consumers using commercial spray tanning to request protection for their eyes and mucous membranes and to prevent inhalation. They advise the use of protective undergarments, nose filters, lip balm, and eyewear.
Rey Panettieri, a toxicologist and pulmonary specialist at the University of Pennsylvania’s Perelman School of Medicine in Philadelphia, expressed concern about systemic absorption of the tanning agents into the bloodstream either through the mucous membranes or inhalation into the lungs.
Disposable nose filters (primarily for use in spray tan booths) can be purchased to keep the spray out of the nose. However, if you do not have a nose filter, you can place tissue into each nostril to prevent the spray from being inhaled.
It’s important to remember that most sunless tanning products do not provide sun protection. You will still need to exercise the same precautions with regard to sunscreens and protective clothing.
Airbrush cosmetics have been around for many years, though until fairly recently, they were primarily used in film and theater.
These products are typically applied with a spray gun attached to a container of the cosmetic product, and require some type of compressor or propellant. There are businesses that specialize in this line of cosmetics and provide the service exclusively at their establishment, as well as those that provide the color matching, training, product, and equipment for home use. One company that specializes in covering skin conditions affecting pigmentation, like vitiligo, is Microskin.
There are also home cosmetic airbrush systems (kits) available for purchase online, as well as commercial “airbrush sprays” available in aerosol cans not requiring any additional equipment.
If you want to try a home airbrush system, it might be worth the investment to begin with a professional company (or person) who already has a variety of colors in stock, knows how to use the equipment, and can provide training, to help narrow the choices if you decide to purchase one. The airbrush product comes both with and without DHA. A nice benefit of this product is that it is water resistant, so it does not smudge or wear off, but can be easily removed at the end of the day with a make-up remover. If you use an airbrush product that also contains DHA, then after removing the airbrush product, the DHA tan will remain on the skin as discussed above.
How to Locate: Consult your local phone book, or run an online search
for “airbrush makeup” + your city and state, to locate businesses in your area.
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What's On Your Mind?
Q. I’m 44 years old and have developed several age spots and small wrinkles on my face, but because of my vitiligo, I was afraid to use any skin lightening products. My dermatologist wrote a prescription for a product called “Renova,” which he said was safe to use with vitiligo. I am skeptical and haven’t filled the prescription. Is it OK to use Renova if you have vitiligo?
- The active ingredient in Renova is tretinoin, which is widely used to treat acne, but is also used to treat dark spots (such as age spots) as well as fine wrinkles. The good news is that tretinoin has been studied for use in combination with topical corticosteroids as a treatment for vitiligo, and was found to be safe and effective. Tretinoin may increase the skin’ sensitivity to light, so it is important to use sunscreen on areas being treated.
There are many different tretinoin products which come in a variety of strengths and bases such as creams, ointments, gels, and liquids.
VSI reached out to several dermatologists and asked for their opinion. All reported that they prescribe tretinoin products for their vitiligo patients and have not had problems.
Below is one response we received:
“I have many teenagers with acne and vitiligo, often co-localized on the face, who have used tretinoin products without problems. It’s important to start slowly to avoid irritation which can Koebnerize (trigger) vitiligo. If irritation develops, I decrease frequency of use. Individuals on tretinoin-based agents should use sunscreen on a regular basis to reduce risk of phototoxic reaction (sunburn).” Source: Nanette Silverberg M.D
Q. What can I use to color my eyebrows that have turned white?
My natural hair color is a dark brown, but the vitiligo around my eye has now resulted in some of my eyebrows and eyelashes turning white. I've tried using mascara, as well as an eyebrow pencils, but neither work very well. The mascara is very difficult to work with - it's sticky and messy and difficult to spread, and the eyebrow pencil always seems to wear off very quickly. Do you know of any FDA approved dyes that are safe for vitiligo and that can be used around the eye?
- VSI was unable to find any product testing specific to vitiligo for these types of cosmetics. However, some of our members have reported satisfactory results with various other eyebrow-oriented products, such as liquid eyeliner pens, as well as ordinary permanent markers.
Application is very quick, but because you would be applying these products to the eyebrows or eyelashes rather than the skin, as with anything new, it may take a few days practice to get the best results.
The best approach is to begin by holding the product in an upright/vertical position, then rubbing the side of the pen or point of the marker carefully across the brow hairs that you wish to color. The challenge is to color the brow hairs without actually getting it on the skin, which will show up as a distinct mark, making the appearance more obvious and less natural.
For the eyelashes, the liquid eyeliner pen might provide better color and be easier to manage with the thinner point, but either would work. You would hold the pen upright while running back and forth through the lashes, again taking care not to mark the skin.
In America, these products are readily available at most grocery stores, drug stores or big box stores. The permanent markers are very inexpensive and come in a wide variety of colors. The liquid eyeliner pens are a bit more expensive, but are available online as well as in most of the stores mentioned above.
As always, you would want to do your homework to confirm the ingredients and take care to avoid those products that contain chemicals identified as problematic for vitiligo. Unfortunately, many of these products do not include an ingredient list in the store package, so you’ll likely need to look online before purchasing.
In a previous newsletter, VSI asked Ray Boissy, Ph.D., Professor of Dermatology & Cell Biology and Director of Basic Science Research at the University of Cincinnati College of Medicine for a list of the hair dye ingredients known to cause pigment loss. We can only report on chemicals that have been tested for vitiligo, so while the chemicals listed below are known to cause pigment loss, there may be others as yet unidentified.
Known Hair Color Chemicals to Avoid:
Butylated Hydroxytoluene (BHT);
P-Phenylenediamine (aka- para-phenylenediamine -ppd or P-Phenylenediamine)
According to VSI’s web search, the markers and pen displayed above
do not contain any of the chemicals from the above list. However, you might
want to run your own search prior to use, in case of any changes or updates.
To View “Revlon Colorstay Liquid Eye-Pen” Ingredients, click here,
then select the tab marked “Ingredients.”
To View the Dept. of Health and Human Services “Product Information”
for “Sharpie Chisel Tip Permanent Marker, All Colors” click here.
To view the Dept. of Health and Human Services
list of products containing p-Phenylenediamine, click here.
Medical News Updates
Highlights of recently-published medical
articles on vitiligo and its treatments
Exciting New Vitiligo Treatment in the News!
Drs. Brett King and Brittany Craiglow, assistant professors of dermatology from Yale University, recently published a case study about a potentially promising new treatment for vitiligo.
A woman in her 50s with widespread and progressive vitiligo became increasingly concerned as it began spreading to her face and hands. She had tried multiple treatments over the course of a year; however, her vitiligo continued to spread.
Given the continued progression, limited treatment options and the patient’s increased concern, King and Craiglow decided to pursue a therapeutic trial of a drug called tofacitinib that had been used to successfully treat rheumatoid arthritis and alopecia areata.
They began treatment with oral tofacitinib citrate (Xeljanz) at a dosage of 5 mg every other day. After 3 weeks, the dosage was increased to 5 mg per day (half the approved dosage for rheumatoid arthritis).
Within 2 months, the patient experienced partial repigmentation of her face, arms and hands, and after 5 months, she had nearly completely repigmented.
She experienced no adverse effects and no abnormalities in her lab work, which included complete blood cell count, serum creatinine, hepatic function, and lipids.
The doctors found it noteworthy that not only was there a fairly rapid response to the use of tofacitinib, but that the patient’s hands also repigmented, an area where treatments are generally less successful. They suggested further investigation into the drug’s safety and effectiveness, including in those who have had vitiligo for longer periods. Since serious side effects, including infections and malignancies, have been reported in patients using oral tofacitinib (mostly in those with rheumatoid arthritis), development and investigation of a topical formulation would also be helpful.
What is Tofacitinib?
Tofacitinib is a type of medication known as a janus kinase (JAK) inhibitor that works by inhibiting the activity of a specific family of enzymes, resulting in interference with the signaling pathways that cause, or trigger certain diseases.
Researchers have for several years been closing in on the biological pathways that could turn off the immune response that causes vitiligo. However, a cure is not that simple. We know that vitiligo is an autoimmune disease caused by the body targeting (and killing) its own melanocytes (pigment making cells). However, by stepping in and removing the immune response to melanocytes, you run the risk of removing the body’s ability to recognize the cells that cause melanoma, which from a health standpoint would be a far worse diagnosis.
Consequently, research into new drugs for vitiligo treatment must be very specific about the type, location, and safety of any response that is interfered with or turned off.
The probability of JAK inhibitors working as a treatment for vitiligo has been the subject of intense investigation for several years by researchers such as Dr. John Harris of the University of Massachusetts Medical School. Understanding the precise interplay of receptors, pathways, and cells has led them to believe this treatment would work for vitiligo. Drs. King and Craiglow, who published the paper documenting the use of tofacitinib successfully on a vitiligo patient, have credited Dr. Harris and his research for inspiring them to try the treatment. However, it’s not as easy as just getting tofacitinib approved for vitiligo. In addition to establishing safety and efficacy, another consideration even when bringing an existing drug to market for a different disease such as vitiligo (repurposing) is the likelihood that the drug can, and will be, prescribed.
Researchers can only carry this so far. Once their work is done, it is up to the pharmaceutical companies to make the decision as to whether they could ever recoup the millions of dollars that it would cost for the testing required to bring the drug to market for a new indication. This is where the insurance companies enter the equation. You can have the best treatment in the world, but if insurers will not cover it, very few patients could ever afford to try it. If the drug never makes it to the patients, then those millions of dollars spent on clinical trials will all have been for naught.
Dr. John Harris Answers Your Questions!
The response to this news created a record number of questions and comments received by VSI.
To be certain of accuracy, we went directly to the expert for answers to the most popular questions.
VSI: What might the next steps be in making a drug like tofacitinib available as a vitiligo treatment?
Dr. Harris: Right now tofacitinb is approved only for rheumatoid arthritis, so prescribing it to vitiligo patients is using it "off-label." While this is an acceptable practice, in most cases it will not be covered by insurance, and therefore it is out of reach for most patients because it is very expensive (about $2500 per month). So for tofacitinib to become widely available for vitiligo patients, we need to show that it is effective in more people, and convince insurance companies to cover its use in vitiligo.
Naturally, insurance companies are not interested in paying for new, expensive drugs, so it is the job of vitiligo patients to advocate for themselves, raise public awareness about vitiligo as a disfiguring disease, and discuss the importance of treatment with their insurance companies. In addition, there are newer, "next-generation" versions of tofacitinib being developed that we hope will be even more effective and safe, and that these will be submitted to the FDA specifically as vitiligo treatments. Then they will become more widely available.
VSI: What is your “best case” - worst case” scenario for how long it might take for a drug like tofacitinib to become available for adult vitiligo patients??
Dr. Harris: First, remember that tofacitinib is already available for adult patients when prescribed “off-label” and paid for out-of-pocket. But for its widespread availability, and to be covered by insurance:
Best case scenario – Pfizer recognizes the huge opportunity that exists for developing tofacitinib for vitiligo, which currently has no FDA-approved treatments. In comparison, psoriasis, another inflammatory disease of the skin, is a $12B per year industry. Vitiligo affects a similar number of people, so that is a lot of potential for growth and profit. They would have to invest up-front to do the clinical studies to prove that it is effective and satisfy the FDA, but then they could market the drug to the ~35 million patients who suffer from it in the US. That would most likely take 1-2 years.
Worst case scenario – We have to wait until companies with "next-generation" inhibitors similar to tofacitinib are able to produce the drugs, test them for safety in Phase I trials, prove their efficacy in Phase II trials, and then seek FDA approval for the drug in vitiligo. This will take a minimum of 3 years, but more likely 5-7 years from now.
VSI: Tofacitinib is currently only approved for use in adults. If it were to become approved as a vitiligo treatment for adults, do you see any hope down the road for a similar treatment becoming available for those under the age of 18?
Dr. Harris: Yes, I do. There are many drugs first approved in adults for inflammatory skin diseases that are highly effective and with a good safety profile that are now used in children. Naturally, physicians typically like to get comfortable with the drug in adults first, but children are often more resilient than adults, and able to tolerate medications very well. I would expect the use of these new drugs in children will lag behind adults by 2-3 years at least, but not forever.
Dr. Harris will be speaking at the upcoming Conference in Orange CA.
If you would like the opportunity to meet and speak with him personally, plan to attend!
For Conference Information: Click Here
VSI would like to thank John E. Harris, MD, PhD, Assistant Professor, UMASS Medical School, Division of Dermatology, for his medical review of, and assistance with, this article.
Advocate for Vitiligo
VSI is currently working in sub-committees to increase awareness of:
- Vitiligo as a disease (not a condition)
- The devastating emotional impact of the disease
- The need to address and abolish discriminatory practices of insurance companies
- The need to reduce or remove barriers to vitiligo treatments
- The need for better treatments
VSI will keep its members informed of advocacy opportunities.
Editor’s note: Those of you who have been following the genetic research of VSI’s MSAC member, Dr. Richard Spritz, know that his team has uncovered many genes confirmed with (generalized) vitiligo that are also shared by other autoimmune diseases such as rheumatoid arthritis, type 1 diabetes, psoriasis and Hashimoto’s thyroiditis (to name a few). These gene discoveries specifically linking rheumatoid arthritis and vitiligo were the genesis of Dr. Harris’ research into the common biological markers and pathways that led to the trial of tofacitinib in this vitiligo patient. Other research of this nature will provide more clues as to which drugs may or may not also work for vitiligo.
None of this research would be possible without the participation of volunteers. If you qualify for a research study listed below in this newsletter, please consider participating.
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Research & Clinical Trials
New Pilot Study In Boston MA
Open-label Pilot Study of
Abatacept for the Treatment of Vitiligo
Principal Investigator: Dr. Victor Huang
Brigham and Women’s Hospital Clinical Research Program
221 Longwood Ave. Boston, MA 02115
Abatacept has been shown to decrease T cell activity and reduce symptoms associated with rheumatoid arthritis. Similar pathways have been shown to be involved in vitiligo.
This study is seeking adult patients with active vitiligo to receive 24 weekly self-administered injections of abatacept, to see if the vitiligo lesions stop spreading, and start to repigment.
A 32 week follow-up visit will be performed to evaluate secondary endpoints as well.
Must be over the age of 18
Must have actively progressive vitiligo (defined as development of new lesions or worsening of existing lesions within the past 6 months) covering at least 5% of body surface area
Subjects receiving treatment at the time of screening will be eligible providing they undergo a wash out period prior to starting the study
Women of childbearing potential (WOCBP) must be using an acceptable method of contraception throughout the study and for up to 10 weeks after the last dose of study drug, and have a negative serum or urine pregnancy test result (minimum sensitivity 25 IU/L or equivalent units of HCG) within 0 to 48 hours before the first dose of study drug
Sexually active fertile men must use effective birth control if their partners are WOCBP
Pregnant or breastfeeding patients
Patients with segmental, acrofacial, or universal vitiligo
Patients with evidence of white hairs within the majority (>50%) of their vitiligo lesions
Patients currently on any other systemic biologic medication, current use of Abatacept, or any other systemic biologic medication within 2 months of study
Use of systemic immunosuppressive agent within 2 weeks prior to initiation of Abatacept
For additional study criteria see contact information below.
If you are interested in participating or would like more information:
Contact: Dr. Victor Huang ph: 617-732-4918 or
Andrea Craft ACRAFT1@partners.org
New Segmental Vitiligo Study in Detroit MI and Worcester MA
Study to Identify the Autoimmune Mechanism
Behind Segmental Vitiligo
|UMass Dept. of Dermatology|
55 N. Lake Ave
Worcester, MA 01655
| ||Henry Ford Dept. of Dermatology|
3031 West Grand Boulevard
Detroit, MI 48202
Scientists from three United States academic centers are collaborating to identify how
and why the immune system initiates an autoimmune attack against specific pigment
cells in segmental vitiligo. By understanding why this happens, new treatments targeting
this process can be designed.
In segmental vitiligo, pigment cells on one side and area of the body are destroyed
leaving a white area behind. One theory as to why this specific area loses its pigment
cells is the pigment cells in segmental vitiligo may express different proteins from
other pigment and non-pigment cells in the body. In order to identify these differences,
a thin piece of repigmented (regain of color) vitiligo skin and sample of blood is needed.
Your participation is vitally needed
- Ages: 7-89 years of age
- Diagnosis of segmental vitiligo
- At least 1 spot of repigmentation (regain of color) within the segmental vitiligo
Exclusion Criteria: The following will not be eligible:
- Diagnosis of generalized vitiligo
What will happen if I participate?
- A small amount of blood will be collected in the same manner as blood drawn at your regular doctor’s office.
- A superficial piece of tissue (shave biopsy) will be taken from the area of segmental vitiligo. Shave biopsies are a common procedure performed at dermatology offices.
To participate, or for more information:
Contact: Dr. Tasneem Mohammad
Phone: 313-916-6964 or Email: email@example.com
New Autoimmune Vitiligo Study in Detroit
Role Of Immunosuppressive Cells In The Development Of Vitiligo
Iltefat Hamzavi M.D.
Henry Ford Department of Dermatology,
3031 West Grand Boulevard Detroit, MI 48202
Patients with vitiligo often have either a personal or family history of other
autoimmune conditions. This association may be due to a common underlying
immune mediated mechanism. As humans have an active immune system to fight
off infections and viruses, a check-and-balance system exists to keep the immune system from attacking your own cells. When the immune system attacks the body’s
own cells, we call this an autoimmune condition. In our study, we are trying to assess
the role of regulatory cells for the immune system in the development of vitiligo.
Ultimately, the goal of this research is to find new therapeutic strategies for
autoimmune vitiligo to stop an ongoing immune attack on pigment cells in active vitiligo
- Ages: 18-89 years of age
- Diagnosis of generalized vitiligo
- No personal or family history of other autoimmune conditions is required.
Exclusion Criteria: The following will not be eligible:
- Women who are lactating, pregnant or planning to become pregnant
What will happen if I participate?
- Demographic (age, gender, ethnicity) and medical history will be collected.
- A small sample of blood will be collected in the same way that blood is drawn at your regular doctor’s office.
To participate, or for more information:
Contact: Dr. Tasneem Mohammad
Phone: 313-916-6964 or Email: firstname.lastname@example.org
New Needling Clinical Trial in New Jersey
Assessing the Efficacy of Needling
With or Without Corticosteroids in the Repigmentation of Vitiligo
Babar Rao MD
Rutgers - Robert Wood Johnson Medical School
1 World’s Fair Dr, Somerset, NJ
Needling is an office-based procedure that transposes healthy, pigmented skin cells to depigmented areas using a needle. This trial will investigate the use of needling to treat vitiligo. It will compare needling alone to needling with corticosteroid.
- Ages: 18 – 89 years
- Patients with 3 or more localized patches of stable vitiligo
- No prior treatment or had failed previous vitiligo treatments.
Exclusion Criteria:Those with the following will not be eligible:
- Unstable vitiligo (no new or changing lesions in past 6 months)
- Allergic to triamcinolone
- Using systemic treatments
If you are interested in participating or would like more information:
Contact: Aida – 732-235-7765 or Danielle - email@example.com
Melanocyte-Keratinocyte Transplant Procedure
Opportunity in Detroit!
Comparative Study Using Dermabrasion versus CO2 Laser
and Collagen Dressing versus Vaseline Gauze in MKTP
Principle Investigator: Iltefat Hamzavi, MD
Henry Ford Department of Dermatology,
3031 West Grand Boulevard Detroit, MI 48202
The melanocyte keratinocyte transplant procedure (MKTP) involves transplantation
of the skin cells that produce pigment from your normal skin to the depigmented skin. The procedure takes approximately 4 hours and is done under local anesthesia.
This is a prospective, open-label, parallel study comparing two different techniques
for preparing the depigmented skin (carbon dioxide laser versus dermabrasion)
and comparing two different wound dressings (collagen dressing versus vaseline impregnated gauze) for the melanocyte keratinocyte transplant procedure.
- Must be 18 years of age or older
- Must have depigmented patches of skin
- History of acral vitiligo (vitiligo on the hands or feet)
- Unstable vitiligo, defined as any new or enlarging areas of
depigmentation within the last 6 months)
- History of thickened scars or keloids
- History of koebnerization (getting new areas of
depigmentation at sites of trauma, such as a cut, scrape, or burn)
The vitiligo patch will be divided into four quadrants. Each quadrant will be
treated with the melanocyte keratinocyte transplant procedure, as follows:
- CO2 laser for denuding the epithelium Collagen dressing
- CO2 laser for denuding the epithelium Vaseline impregnated gauze dressing
- Dermabrasion for denuding the epithelium Collagen Dressing
- Dermabrasion for denuding the epithelium Vaseline impregnated gauze dressing
The patient will return to the clinic for the dressing removal 1 week post-procedure. Repigmentation of the treated areas will be assessed by in-person, or remote examination (emailed photographs) at monthly intervals (1-6 months) after MKTP.
To participate, or for more information,
Contact: Dr. Tasneem Mohammad
Phone: 313-916-6964 or Email: firstname.lastname@example.org
A Special Call To African-American Vitiligo Patients
University of Colorado
Health School of Medicine
International Study to Find Vitiligo Genes
A Special Call To
African-American Vitiligo Patients
Over the past 18 years, we have carried out basic genetic studies of vitiligo, begun with the urging and active participation of vitiligo patient groups, including VSI. Over 10,000 vitiligo patients around the world have taken part. The results have yielded extraordinary progress in understanding the epidemiology and biology of vitiligo. Accordingly, for the first time major drug companies are seriously pursuing vitiligo as a treatment target.
Thus far, our studies have mostly targeted Caucasians, simply because of the large numbers of patients we need for major genetic studies. We’ve also been able to extend our findings from Caucasians to Indian-Pakistani and Asian patients, who have enrolled in smaller numbers. However, we have not been able to extend our findings to African-Americans, simply because we haven’t been able to enroll enough patients from this important group in the USA.
Now, we hope to specifically target African-American enrollment, to understand whether the basic biology of vitiligo that we’ve outlined by studying Caucasians also pertains to individuals of African descent. Otherwise, advances in vitiligo testing and treatment may not be extensible to African-Americans. At the very least we need to enroll several hundred additional African-American vitiligo patients, and also a similar number of unrelated, unaffected African-American "controls”. We believe you are out there, among the membership of VSI. Won’t you please help by participating? There is no cost, all participant information is kept confidential, and you will be potentially helping yourself as well as other African-Americans who suffer from vitiligo.
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!
NEW! - Support VSI Through Ebay
New Way To Support VSI Through Ebay!
Do you sell items on eBay, or want to hold an online garage sale? If so, consider donating a percentage of your proceeds to VSI through eBay’s Giving Works program! It’s easy – when you list an item through a Giving Works listing, choose to send 10-100% of the final sale price to VSI. Your listing will have a special placement and designation. You’ll receive a proportional fee credit from eBay, and will also receive a tax donation receipt when the donation is deducted from your funds received. It’s a great opportunity to make some money for yourself and for VSI, so clean out those closets and garages and get selling!
To Learn More About VSI's Giving Works: Click here
Earn Funding for VSI 3 Ways When You Shop!
Please keep VSI in mind when you do any of your online shopping
With thousands of items in addition to books, Amazon.com is a one stop-shopping center! Simply shop through the above link (bookmark it for easy reference), or from the Amazon box on our Community Home Page, and VSI will earn fees, based on a percentage of the sale. The more items purchased by members, the higher the percentage! Our Vitiligo Library and Store, containing books, articles and products for those with vitiligo, is also powered by Amazon.
iGive.com offers access to free shipping deals and exclusive coupons, on top of the great deals you'll find every day through its network of 1,000+ stores, including Pottery Barn, REI, Staples, Petco, Expedia, Best Buy, QVC and many more. Best of all, up to 26% of your purchase at each store is donated to VSI at no cost to you! Let friends and family know so they can support VSI, too. Click register for iGive to get started today, and download the iGive button to automatically benefit VSI whenever you go to an included store. You can also raise a penny per search through iGive’s search engine, isearchigive.com.
GOODSEARCH SHOPPING AND DINING!
GoodSearch and Goodshop, like iGive, offers coupons, discounts, and donations to VSI through its network of over 5,000 stores. Just click the link above to get the savings started and the donations flowing!
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