Contact Us
Online: www.VitiligoSupport.org
Email: Contact Us
Postal Mail Address
Vitiligo Support International
P.O. Box 3565
Lynchburg Va 24503
Phone: (434) 326-5380
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, M.D., Ph.D Honorary/Deceased
Message from the Executive Director
Dear VSI Members, Friends, and Donors,
Historically, vitiligo has been a very challenging condition. When first diagnosed, the overwhelming response is to find any way to regain lost color. However, physicians knowledgeable and supportive of current treatments have been difficult to find and waiting lists are long … all while color continues disappearing.
Treatment choices for decades were limited to greasy topicals with side effects and warning labels, and were prescribed by less-than-enthusiastic physicians conveying their opinion that none of the treatments worked well or were worth the time, trouble, or expense.
The thing is, it was never all about the treatments
or whether or not a person even chose to treat….
It was about being respected,
feeling heard, and being offered choices
A little empathy and understanding of the emotional toll of a life-altering skin disease would have been as valuable as the greatest medical treatment.
Even as new effective treatments began to emerge, they were expensive, slow to produce results, time consuming to schedule or use, and because they were “off-label” many physicians continued refusing to prescribe them and/or insurers refused to cover them
Finally, in July 2022, we turned a page in history when
we received FDA approval for Opzelura (ruxolitinib cream),
the first on-label treatment for the repigmentation of vitiligo!.
Not only did we gain an approved treatment, but the exposure of national advertising campaigns during very prominent events (like the Super Bowl) has given vitiligo a much higher profile. Millions of viewers (and physicians) are learning about vitiligo every time one of these commercials airs. We are no longer in the shadows!
I’ve had vitiligo for 35 years. I’ve lived through a lot of the challenges and seen a lot of change. Each passing year brings more breakthroughs and promise. However, our options are still limited, expensive, time-consuming, and long-term. I am keenly aware that there are still a great many members in our community who are desperately seeking support and understanding, as well as access to treatment.
How Can VSI Help?
While VSI remains committed to supporting the vitiligo community, it’s important to understand that our ability to help is directly tied to the financial support we receive.
Our resources continue to be limited by the current level of incoming funding.
VSI Has Long Been a
Leader in Patient Support
Judging by the number of requests we receive;
it is apparent that our services are still very much in demand.
Support VSI
Is VSI Meeting YOUR Needs?
If YOUR Answer is No,
Have you considered that the services you want or need
require funding and manpower that we simply do not have?
Yes, Your Donation Does Matter
Sincerely,
Jackie Gardner
Executive Director
Congratulations VSI:
Awarded 2024 Gold Seal of Transparency!
With a database of more than 1.8 million IRS-recognized organizations,
GuideStar is the most complete source of information about U.S. charities.
Search Vitiligo on Guidestar.
New Pediatric Treatment Guidelines!
Nearly half of all vitiligo cases develop during the first 20 years of life. According to a 2023 population-based survey, there were more than 591,000 cases of vitiligo in children (ages: 4–11) and adolescents (ages: 12–17 years) in the United States in 2020.
It is well-established that vitiligo beginning in childhood is more aggressive and widespread compared to vitiligo that develops later in life
Research has also established that the longer any vitiligo lesion exists, the greater the accumulation of memory T-cells. A 2019 research article about vitiligo memory T-cells stressed the importance of early intervention saying: “vitiligo could be seen as an emergency disease needing an early intervention during the initiation of the disease to prevent this inadvertent accumulation of resident (memory)T cells.”
It is clear that the most positive treatment outcomes are dependent on initiating an effective therapy as soon as possible. With all of this evidence, you might think that vitiligo in a child would warrant a first-available dermatology appointment to begin immediate therapy with the most effective treatment available.
Unfortunately, as many of us know first-hand, it remains difficult for anyone with vitiligo, young or old, to locate a dermatologist knowledgeable of and willing to prescribe current treatments. With the first FDA-approved vitiligo treatment in July 2022, the situation is slowly improving for adults. Sadly, the same cannot be said for our children.
VSI continues to hear from parents desperate to find help for their children with vitiligo. Even if a physician is known to prescribe vitiligo treatments for adults, many of the same physicians refuse to prescribe any treatments for children.
To make matters worse for those patients that do get a prescription, many times it is for an outdated treatment with either poor efficacy or side effects that limit the long-term use required for any vitiligo treatment to actually work.
When parents inquire about more current treatments, like narrowband UVB (NB-UVB) or tacrolimus, many are still informed that these options are off-label and unsafe for children. Although topical tacrolimus is a well-established first-line therapy for vitiligo in adults, with data supporting its safety and efficacy in pediatric patients, the lack of official guidelines for its off-label use in children continues to create a barrier that prevents many from accessing this treatment.
These challenges have resulted in children being placed on waiting lists for up to, or over a year. While others fly thousands of miles, some even seeking a provider in another country, simply to have their child seen during this critical time, by a dermatologist knowledgeable of current pediatric treatments.
It shouldn’t be this hard.
The last set of vitiligo guidelines was released by the American Academy of Dermatology in 1996, which predates many of the newer treatments, including the first FDA-approved treatment for vitiligo in patients aged 12 and older, ruxolitinib1.5% cream.
However, until now, no standardized treatment protocol has ever been established in the United States, for pediatric, adolescent, and young adult vitiligo.
This current lack of guidelines for children and young adults has at the very least contributed to significant gaps in standardized care, but physicians less knowledgeable about vitiligo might even interpret it as an indication that no effective vitiligo treatment exists for these age groups or use it as an excuse not to prescribe anything.
This underscores the urgent need for updated treatment guidelines, not only for all current established therapies, but to facilitate the integration of new treatments as they become approved.
In response to this need, a team of pediatric vitiligo experts, spearheaded by Dr. Nanette Silverberg of the Icahn School of Medicine at Mt Sinai in New York, set a novel US standard by developing new evidence and consensus-based recommendations, published in JAMA Dermatology on March 13, 2024.
An extensive literature review was conducted on PubMed focusing on studies about pediatric vitiligo. The selected studies were uploaded to a leading healthcare software platform and reviewed based on specific inclusion criteria. Qualifying articles then underwent a consensus process.
Part one of these recommendations is primarily focused on topical therapies, with future plans to develop similar guidelines on psychological evaluation, medical evaluation, laboratory screening, phototherapy, and grafting procedures.
The authors emphasized that those who develop vitiligo before age 12 typically have a more severe form of the disease. Therefore, early intervention in new-onset vitiligo is especially recommended in children to control the progression of pigment loss and promote repigmentation.
Vitiligo is an acquired and often progressive, chronic, relapsing autoimmune condition that substantially affects quality of life, with high rates of depression, stigmatization, and long-term psychological and developmental problems. Early, effective and sustained intervention is critically important to halt and reverse disease progression.
Treatment Recommendations
First-line therapies found to be well-tolerated and effective:
Topical calcineurin inhibitors (TCI)
Topical Jak inhibitor (tJAKi)
Phototherapy (308-nm laser or NB-UVB lightbox) either in office, or home phototherapy
The combination of NB-UVB and topical therapy enhances the initial repigmentation response, with the alternative of short outdoor sun exposure (10-15 minutes)
TCI: As a first-line therapy, tacrolimus and pimecrolimus may be used for vitiligo in children (ages 2-18) and young adults without concerns for the potential adverse effects of topical steroids, such as skin thinning/atrophy. Users should be counseled on the potential risk of burning, itching, and/or stinging during first few weeks. However, if visible signs of irritation or inflammation are observed, discontinuation is advised.
Standard Protocol: Twice daily application for a minimum of 3 months and continued use for 6-12 additional months when repigmentation is underway. When following treatment protocol as prescribed, if there is no response at the threemonth mark, an alternate therapy should be considered. Adult data has shown success using twice weekly as a maintenance therapy to retain pigment where there is concern of relapse.
TCS: Class 1 (Superpotent) or Class 2 (Highly Potent)
Standard Protocol: Due to potential side effects, the choice of specific class of TCS depends on location and length of time to be used. For areas with thin skin (face/eyelids, groin) TCS are considered second-line therapy due to risks with prolonged use.
Class 1 (Superpotent): intermittent or short-term continuous use with overlap with a TCI.
Class 2 (Highly Potent) may be used daily. However, short term use, or overlap with TCI’s is recommended for longterm use, due to risk of atrophy.
tJAKi: Best data found for ruxolitinib 1.5% cream (recently FDA-approved for vitiligo)
Standard Protocol: Age 12 and older, applied twice daily (maximum 10% body surface area) for a minimum of 6
months. The addition of UV Light therapy has been found to enhance outcomes.
May take longer than three months for initial results, and longer than one year of continuous use for maximum results.
Can be applied to areas with thin skin including face, eyelids, and groin, without risk of atrophy (skin thinning)
Phototherapy:
Although noted as a well-tolerated and effective “mainstay” for young vitiligo patients, because this paper is mainly focused on topical therapies, phototherapy protocol was not included.
They mention that data from adult phototherapy has been reassuring, however, long-term monitoring for skin cancers is advised, particularly when using total body phototherapy or when combined with TCIs.
Physician Recommendation
For children who may first see a primary care physician, or a dermatologist unfamiliar with current treatments and protocols, it is recommended that the physician provide a topical therapy and immediately refer the child to a dermatologist or pediatric dermatologist knowledgeable of a wide range of therapeutics including phototherapy
Key Points:
- Prompt intervention in new-onset vitiligo is especially important with children to control disease spread and promote repigmentation.
- With all topical therapies, the response is best on the face, followed by the torso, arms and legs, and lastly the hands and feet.
- TCIs, TCSs, tJAKi, and phototherapy (NB-UVB light box or 308-nm laser) are the current mainstay of treatment in pediatric vitiligo patients.
- The 3 main classes of topical therapies (TCI, TCS, tJAKi) are effective with good safety profiles.
- The combination of TCS and TCI therapies along with UV-B sources including 308-nm laser, NB-UVB, home phototherapy, or short (10 – 15 min) outdoor UV exposure (sunlight) may enhance initial repigmentation response.
- Topical JAK inhibitors combined with phototherapy (natural sunlight or NB-UVB) have been shown to be synergistic in adults, but safety and efficacy must be confirmed in pediatric patients.
For additional questions or information, you may consult,
or refer your physician to the following source:
Renert-Yuval, Yael et al. “Expert Recommendations on Use of Topical Therapeutics
for Vitiligo in Pediatric, Adolescent, and Young Adult Patients.”
JAMA dermatology vol. 160,4 (2024): 453-461. doi:10.1001/jamadermatol.2024.0021
https://pubmed.ncbi.nlm.nih.gov/38477910/
Have You Used Opzelura?
If you were/are diagnosed with, or are a caregiver for someone diagnosed with, nonsegmental vitiligo, and are currently using Opzelura (and no other treatment) and would be interested in sharing your story about your experience:
Please contact: Erica Cech
What’s On Your Mind?
When People Tell You How to Feel
Q. One thing that has always bothered me is when I confide in a close friend or family member about something I’m not comfortable doing, or a place that I’m not comfortable going, or activity I’m not comfortable participating in, only to be told something like, “oh, no one will even notice,” or “there’s nothing wrong with being different, I like being different.”
I know that they mean well and think they are helping.
So why does it bother me so much?
A. When someone opens up and expresses genuine emotions, they are seeking support and understanding.
Pretending that your vitiligo isn’t noticeable or that it’s something to be proud of is completely dismissive of what you’ve just expressed. It downplays and invalidates your feelings as though you are wrong to feel that way.
You’re not asking them to fix anything, only to understand and offer support. Rather than offering excuses for why you shouldn’t feel uncomfortable, it would be far more helpful to just acknowledge the situation, thank you for trusting them enough to confide in them, and letting you know that they are always there to listen.
Research & Clinical Trials
Povorcitinib Treatment Study
Recruiting in 14 U.S. States
and 9 Countries
Multi-Center, Phase 3, Povorcitinib Clinical Trial
Evaluating the Once-Daily, Oral Jak Inhibitor,
for the Treatment of Non-Segmental Vitiligo.
This is a 52-week, Phase 3 randomized, double-blind, placebo-controlled, multi-center study, investigating the efficacy and safety, of povorcitinib, an oral JAK 1 inhibitor, in participants with non-segmental vitiligo.
Research shows that when the JAK signaling pathway becomes over-
active, it drives the inflammation associated with triggering the onset of,
and subsequent progression of vitiligo. The goal of povorcitinib, a once daily oral tablet, is to reduce or block this process.
Participants will be in the study for about 1 year and attend about 11 study visits.
Key Inclusion Criteria
- Must have a clinical diagnosis of non-segmental vitiligo
- Must be 18 years of age or over
- Must discontinue all treatments
- May not be, or become pregnant or father a child
- May not have any other form of vitiligo or depigmentation disorder
- May not have used laser or phototherapy within 8 weeks prior to Day 1
- May not have used dihydroxyacetone (sunless tanner) within 4 weeks
prior to Day 1 - May have no past use of the depigmenting agent monobenzyl ether of
hydroquinone including Benoquin® - May have no history of melanocyte-keratinocyte transplantation
procedure or other surgical treatment for vitiligo.
Additional Eligibility Criteria
Currently Recruiting in Bulgaria, Canada, France,
Germany, Hungary, Italy, Poland, UK, and the following U.S. States:
AL, CA, FL, GA, IL, IN LA, MD, NH, NY, OH, OR, TX, WA
Recruiting Locations Being Updated!
Treatment Study
Recruiting in 15 US States
& 16 Countries
Multi-Center Phase 3 Clinical Trial
Evaluating the Oral Jak Inhibitor, Ritlecitinib,
for the Treatment of Adults with Vitiligo
This is a 52-week, Phase 3 randomized, double-blind, placebo-controlled,
multi-center study, investigating the efficacy, safety, and tolerability of ritlecitinib, an oral JAK3 inhibitor, in adults with active or stable, nonsegmental vitiligo.
Research shows that when the JAK signaling pathway becomes overactive, it drives the inflammation associated with triggering the onset of, and subsequent progression of vitiligo. The goal of ritlecitinib, a nonsteroidal, anti-inflammatory, once daily oral capsule, is to reduce or block this process.
Key Inclusion Criteria
• Must have vitiligo (active or stable) for at least 3 months
• Participants 18 years of age or over are eligible.
Additional Participation Criteria
Currently Recruiting in the Following U.S. States:
AZ, AR, CA, FL, IL, IN, MD,
MI, MO, NY, NC, OH, SC, TX, VA
Currently Recruiting in the Following Countries:
Australia, Bulgaria, Canada, China, Germany,
Hungary, Italy, Japan, Mexico, Poland, Slovakia,
Spain, Taiwan, Turkey, United Kingdom
Click Here for Complete List of Sites and Contacts
For Additional Information:
[email protected]
Afamelanotide Treatment Study
DO YOU HAVE GENERALIZED VITILIGO
ON THE FACE AND BODY (for at least 3 months)?
Study Information:
An investigational therapy called afamelanotide is being
evaluated as a treatment for vitiligo patients with darker skin types.
TWO STUDY TREATMENT GROUPS:
A. Narrowband ultraviolet B (NB-UVB) in combination with afamelanotide
B. NB-UVB alone
You may qualify if you:
- Are aged 12 or more
- Have medium to dark skin
- Do not have extensive white hair in your vitiligo patches
- Do not have a history of melanoma, lentigo maligna or do not have any
malignant (cancerous) skin lesions - Do not have liver diseases
- Are not pregnant or breastfeeding
Participation involves:
- NB-UVB light treatment twice per week for 20 weeks (all participants)
- Receiving an implant of afamelanotide every 3 weeks for 20 weeks (50%
of participants)
Click Here to See Recruiting Study Locations
EMAIL FOR ADDITIONAL INFORMATION:
[email protected]
Shop Online and Earn Funding for VSI
Online Shopping Can Benefit VSI!
Support VSI with 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 About eBay for Charity: Click here
Tobi Cares Donation Program
Tobi is an online women’s clothing design label that brings LA style from its design studio direct to its online clothing store at tobi.com. Go to Tobi Cares and sign up for VSI to receive 1% of your purchase amount.
IGIVE SHOPPING
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!