Message From the Executive Director
Dear VSI Members, Friends, and Donors,
As I write this message, I’ve just returned from one of the most beautiful cities in the world, Paris, France. I had the honor of representing the USA on the steering committee for the first Vitiligo International Patient Organizations Conference (VIPOC). This was a landmark meeting attended by doctors, researchers, patient leaders, and industry representatives from 19 different countries.
Day two began with presentations from the world’s foremost leaders in vitiligo treatments and research, and concluded with very robust discussions among all attendees on ways to improve interactions between the research community and patient advocacy groups.
Day one of the conference was led by the patient leaders with discussion on topics such as best practices, strengths and weaknesses, difficulties faced by the individual groups and organizations, and the common, and unique, challenges of vitiligo patients in their respective countries.
One topic that sparked quite a bit of discussion was regarding patient treatment expectations. As a patient advocate who interacts with vitiligo patients from all over the world, I can tell you that there is indeed a gap between what doctors say and what patients hear. It is this very gap that leads to poor treatment compliance and outcome. This also is a subject of interest and concern of the pharmaceutical companies. Do patients want more treatments? Is it worth their investment to bring vitiligo drugs to market?
Unfortunately, pharmaceutical companies primarily interact with the researchers and clinicians. The scientific and medical communities tend to look at numbers and percentages. My personal experience, as well as those of hundreds of patients with whom I’ve spoken or corresponded, began with a doctor explaining what treatments can’t do, the amount of pigment that probably can’t be regained, the percentages of relapse, the cost, and the time commitment. WOW! It’s no wonder so many patients give up on treatment before it has had a chance to work.
I cannot overstate the importance of positive communication.
Initially patients need emotional support. Drop the stats. They want to be treated with respect and understanding. Yes, vitiligo can be unpredictable, but it is treatable. Yes, it might take a while, but if given realistic expectations and a sense that their doctor cares about their success and is willing to stay with them for the journey, the chances are far greater that they will stick with a treatment to a far more favorable outcome.
Each time I participate in multi-cultural discussions, I am reminded that no matter how far apart we are geographically, we have more in common than not. We may come to the table from different cultures and customs, but in the end, we all want the same things. We want validation that vitiligo is much more than a cosmetic disorder. We want access to treatments and more research. We want our voice to be heard and understood! This is exactly why your patient advocate needs a seat at the table.
Will You Support VSI’s Commitment to
Making Sure the Voice of the Patient is Heard?
How Well do you Know VSI?
Perceptions vs Expectations
What is Your Perception of VSI, and
Does That Influence Your Expectations?
Many times when speaking with VSI members, we find they are surprised to learn about VSI’s history, programs, and resources. Some of our long-time members have questions about why changes were made, and some of our newer members are unaware of features and functions that at one time were synonymous with VSI’s identity.
- How long have you been a member of VSI?
- What are your expectations of VSI?
- Has VSI helped you?
VSI recently reached out to some of our members for some feedback. We asked them about the services and resources they found most valuable, as well as their thoughts and ideas of ways we might better serve their needs. We noticed a divide in the perception and expectations between those who joined in the early days of “Vitiligo Support” and those who’ve joined in recent years.
We learned that some of the long-timers still tend to think of VSI primarily as a website with online forums, as opposed to a nonprofit organization, and their suggestions were primarily about chat rooms and forum functions.
Interestingly, many of our newer members and donors were completely unaware of VSI’s forums, and instead found value in the resources such as our quarterly e-newsletters, work in advocacy and awareness, current treatment information, assistance with insurance coverage, and locating a doctor to prescribe a treatment.
One consistent thought from both old and new......
At a time when I most needed support, VSI was there.
Our work depends on the financial support of the community we serve, and we know that donors should have a clear idea of where their dollars are going and how they’re being used. We decided to take this opportunity to outline VSI’s history, explain decisions that resulted in change, and summarize the work we’re doing on behalf of the vitiligo community.
January 17, 1994:
The devastating 6.7 magnitude Northridge earthquake occurred in the San Fernando Valley region of California. The destruction was massive, taking many years for recovery.
In the months that followed, one affected resident named Randy Salter developed vitiligo. Like so many others, he had never heard of vitiligo. The internet was in its infancy, and current and/or accurate information was very difficult to find. The doctors he initially saw told him that vitiligo was untreatable, and to be glad he didn’t have something serious like cancer. As his vitiligo spread, his frustration mounted.
Randy founded VitiligoSupport.com to fulfill the need for a central location where those affected by vitiligo could find legitimate information, but more importantly, to interact and share support in a safe environment away from online solicitors and scammers.
A variety of forums were created to provide social support, information, and interaction. Website access required only registering for a free online account.
Regional forums helped patients reach out to others in their own area, in some instances leading to the development of local support groups.
Membership steadily increased, soon positioning VSI
as a leader in patient-to-patient support.
To better serve the growing international diversity, geographic and multi-cultural forums were created to address the more specific ethnic and cultural needs of VSI's worldwide community.
Do you know why the jigsaw puzzle was chosen as the logo?
While working to solve the vitiligo puzzle,
the unplaced pieces represented the missing areas of pigment.
Growth and Change:
Meeting the Needs
2003: 25,000 registered members
As membership increased, similarities began to surface in the progression of patients’ emotions and concerns. Initially, the greatest need was for emotional support. But as spirits healed - and the acute emotional phase began to fade, patients began to develop an awareness of the “bigger picture.”
At this stage, frustration and resentment from the blatant disregard of their disease – the disparity of access to treatment, and the meager prospects of improvement, began to surface, leading to their quest for much more.
It soon became apparent that forums, chat rooms, and support groups certainly filled a need, and served an important purpose, but were not a sustainable solution. It was time to branch out from the narrow patient-to-patient focus - primarily serving the needs of today - to the more challenging and sustainable goal to fundamentally improve the future for those affected by vitiligo.
Hope for the Future
May 2004: 27,000 members strong
Vitiligo Support stepped up to the challenge and incorporated, officially becoming
Vitiligo Support International, (VSI) a 501(c)(3) nonprofit patient support organization.
Most nonprofits start at the ground level, building their membership along with their support and services.
However, VSI was born with 27,000 existing members, whose perception did not necessarily change when the organization incorporated.
No longer just a website or a support group, as a nonprofit organization, VSI’s services quickly became greater than forums, phone calls, and emails. The new designation came with the new responsibilities of increasing professional partnerships and modifying the organization’s infrastructure to facilitate the transition to a higher, national level of representation, with a greater emphasis on education, research and advocacy.
2007: Over 43,000 Worldwide Registered Members
In little over three years, with membership steadily growing, the demands for assistance and support increased exponentially, far exceeding the organization’s capacity. VSI made the tough decision to initiate a paid membership level to financially support its expanding programs, services, and advocacy.
Free online accounts remained available and still provided access to all of the forums. However, posting and/or replying in the forums became a benefit of the $25 Annual Supporting Membership. Many of the “long-timers” resented a fee to post and reply, and began to fall by the wayside.
$25 VSI Annual Supporting Membership
Vitiligo Support International (VSI) is a national nonprofit organization providing many services to the vitiligo community. Each annual Supporting Membership supports VSI's efforts to provide patient advocacy to clinicians, researchers, insurance companies, and policy makers; promote vitiligo research and awareness; and produce and circulate a quarterly e-newsletter filled with the most current information available.
2018: Over 60,000 Registered Members
VSI's ability to reach, connect with, and provide information to vitiligo patients all over the world, has led to its identity as a unique and valuable asset to the vitiligo community.
Representation and Collaboration
VSI increased efforts toward rebranding its identity and services from those of an online community, to a nationally focused nonprofit organization; and to convey the importance of national representation to eliminate the barriers to vitiligo research, education and access to care, and ultimately, improve the future environment for the vitiligo community.
Taking a frontline approach to crucial partnerships, collaboration with the world’s foremost leaders of the scientific, medical, and professional communities initiated the process that would establish VSI as a unique leader in the vitiligo world, with a more global focus.
Even though vitiligo is one of the
most prevalent autoimmune disorders,
the needs of the vitiligo patient have long been
ignored, or dismissed as unimportant.
Recognizing the need to evoke real and positive change meant increasing the visibility of vitiligo and advocating for increased research funding, VSI identified national advocacy as an important path of action.
VSI meets with legislators on Capitol Hill several times a year, advocating for legislation to improve public health policy for those affected by vitiligo.
Also key to this process has been VSI’s effort to cultivate and maintain communication and personal relationships with the directors at the National Institutes of Health (NIH), who are responsible for funding vitiligo-related research.
VSI is the only vitiligo organization providing
independent full time office staffing.
Receiving referrals from the NIH, Johns Hopkins, Mayo Clinic, American Academy of Dermatology, and many other professional organizations, VSI stays very busy on the home front responding to email and phone calls that come in 24/7. VSI’s extensive networking capabilities have led to the organization’s identity as a principle means of support, and a valuable asset, to the broader professional community.
VSI Provides Patients and the Medical Community with:
- Quick response time to daily e-mail and phone calls
- Accurate and medically-vetted information
- Assistance with insurance coverage
Local dermatologists who treat vitiligo
Hard-to-find prescriptions like monobenzone
Specialists such as doctors and clinics performing surgical procedures
VSI Also Provides Resources for:
Researchers & Investigators: recruiting patients for clinical trials, surveys, and research studies, and providing letters of support for research funding
Industry: seeking patient participation or feedback for new or improved products, and accurate information for updating their educational resources and websites
Media: seeking current information for television, newspapers, educational publishers, and periodicals
School Counselors and Social Workers: seeking support and resources for students and/or adult clients
Professional organizations: requesting VSI's assistance contacting and educating patients on critical national campaigns
And Above All,
The Power of Knowledge!
No one understands how I feel or what I’m going through.
I feel so isolated and alone. I no longer socialize or have friends.
I feel like everyone is staring at me and laughing at me.
I’ve been struggling with anxiety and depression, and at times even feel suicidal.
I worry that I’ll never marry or have children…. I’ll never be happy again.
VSI regularly receives emails and phone calls from emotionally distraught patients. Many have been told there are no treatments; the treatments are dangerous and don’t work; even if they regain pigment they’ll just lose it again; vitiligo is not dangerous and won’t hurt them; or to just cover it with make-up and learn to live with it.
VSI listens; understands; cares; and conveys....
You are not alone, your feelings are normal, and things will get better.
Take a Stand: Take Charge!
Reaching out for information is the first step in facing your fears. You can either let vitiligo rule your life, or arm yourself with the knowledge necessary to put vitiligo where it belongs, and regain control of your life.
VSI has become the driving force in patient education: answering the questions, dispelling myths, providing current and accurate information, and empowering patients with the courage to face tomorrow.
VSI’s most comprehensive educational resource is its patient e-newsletter,
circulated quarterly to its worldwide membership.
Vitiligo and Thyroid Disease
Vitiligo and OTC Drugs
Vitiligo and Vaccines
Dedicating hundreds of hours to each edition, VSI researches, writes, formats, and produces the only comprehensive, regularly circulated vitiligo patient newsletter. Each edition includes a featured article, treatment updates, medical news updates from around the world, answers to the most popular patient questions, and announcements of recruiting clinical trials.
Connecting Patients and Medical Experts
VSI serves as a liaison, communicating the opinions
and needs of the vitiligo patient community.
VSI Director Jackie Gardner addresses an international collaboration of physicians, researchers, and industry leaders about the many challenges faced by vitiligo patients such as the lack of understanding by many in the medical field about the emotional impact of the disease; the inequality of access to treatment; the burden of the expense of treatments, coupled with problems presented by denial of insurance coverage; and the need for greater financial support of VSI to enable better representation of the needs of the vitiligo community.
VSI was Honored to Represent the USA
and Serve on the Steering Committee for
the APRIL 2018 VIPOC Conference in Paris, France.
VSI took the opportunity to collaborate with a broad spectrum of international vitiligo stakeholders. Gardner voiced the needs and concerns of vitiligo patients, and led a working group on the subject of patient empowerment.
Is the Future Important to You?
Each day, one step at a time, VSI continues its work to make sure the voice of the patient is heard and understood, and to bridge the gap between the unmet needs of vitiligo patients, and those who can change and meet them.
VSI firmly believes that the vitiligo community deserves the same strong patient advocacy representation as other higher profile skin diseases, like psoriasis. We are doing all that we can with the resources we have. If you believe that vitiligo is important and deserves stronger representation, please support VSI with your contribution toward a better future.
It’s important for my children’s future to support an organization that is building awareness. If they ever develop vitiligo, I want VSI to be there for them, like it was for me.
VSI Supporting Member A.R.
“My donation is just a small contribution towards the good causes of VSI. The website maintained by VSI is very resourceful and I'm glad I can reach it over the internet. So long as the activities of VSI can be sustained, it can provide enormous support to the vitiligo community in the world.”
VSI Supporting Member M.L.
Please Support VSI in its Crusade
to Improve the Future of Vitiligo.
VSI continues its commitment to providing
compassionate patient support, and a
to eliminate barriers to research, education, and access to care, for all.
One Voice – One Cause
Unite for Vitiligo
Recurring Monthly Donation
Calling all Medicare Vitiligo Patients!
VSI regularly hears from patients from all over the United States who have been denied insurance coverage for their vitiligo treatment. VSI has been fighting this battle on a national level for several years. While we are definitely making progress, it’s been a slow road.
Part of the problem is that currently there is no accepted standard for coverage of vitiligo treatments. Each company has their own policies and guidelines, many times based on outdated and incorrect information.
What most people may not realize is just how much private insurance coverage can be affected by Medicare policies. Over 55 million Americans are now covered by Medicare or Medicare Advantage, making it the nation’s largest health insurance program. Consequently, many, if not most, insurance providers establish their baseline standards and procedures to follow the Medicare model.
We have been in touch with Medicare and have been told that if we can provide a Medicare letter of denial for a vitiligo treatment, then they will try to help us set a standard of coverage.
If you are reading this newsletter and you, or someone you know, was denied coverage for a vitiligo treatment by Medicare, please contact VSI immediately. You could help make a difference for future insurance coverage for ALL vitiligo patients! Click Here to Contact VSI
What's On Your Mind?
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)
At the time of publication, the markers and pen displayed above
did 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 scroll down to “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
Repigmentation of Tenacious Vitiligo on Apremilast
In 2017, in Toledo Ohio, doctors Sara B. Huff and Lorie D. Gottwald released a case report of a 52-year-old woman with longstanding (23 years) vitiligo. She’d tried many prescribed treatments over the years with no response. In frustration, she’d stopped all treatments over the past 5 years.
She and her doctors discussed the drug apremilast (brand name Otezla), prescribed for psoriasis and psoriatic arthritis. Because these two diseases share a common pathway of autoimmunity and inflammatory signals with vitiligo, the doctors felt the drug might also work for vitiligo.
After only 6 weeks of apremilast treatment (30 mg twice daily), the patient reported new repigmentation. After 3 months of continued improvement, while maintaining the 30 mg apremilast twice daily, the doctors bolstered her treatment with a 60 mg intramuscular triamcinolone acetonide injection. The doctors noted that many years of steroids as a solo therapy had provided no benefit.
Six weeks after the first injection, she began to notice repigmentation on her hands, but also noted some darkening in areas of normal skin. She received a second 60 mg intramuscular triamcinolone acetonide injection at this time and continued the apremilast.
Improvement continued, and at 6.5 months after beginning the apremilast therapy, she reported repigmentation on both arms, legs, hands, feet, chest and face.
After 11 months on apremilast, and 5 months after the last steroid injection, she had achieved 60-70% repigmentation on her chest and arms, and was also repigmenting on her face.
The doctors note the advantages of apremilast therapy include the ease of oral administration, mimimal drug interaction, and its safety profile.
A Phase 2 Clinical Trial of apremilast and phototherapy with non-segmental vitiligo is underway in New York, though no longer recruiting. We will be following this study, and will report any results as they are published.
Improved Color Matched Repigmentation Using aA recent case study conducted in Japan by doctors Tomohisa Hirobe and Hisao Enami included treatment with ultraviolet B (UVB) light therapy and grafting with a mini-punch grafting machine (mMG) on a 21-year old male with progressive vitiligo on the face.
Mini-Punch Grafting Machine and NB-UVB
One month prior to the grafting, the patient began phototherapy three times a week on the depigmented skin, using monochromatic excimer laser (MEL), with an exposure time of 2 minimal erythema doses (MEDs).
Minimal erythema dose (MED) is the amount of UV radiation
that it takes to produce minimal erythema (pink or reddening)
of an individual's skin within a few hours following exposure.
Seven days prior to the grafting, the patient received this same phototherapy treatment on the normal (pigmented) scalp area that was to be the donor site.
Using the mMG machine, 250 punch biopsy pieces (1.0 mm in diameter, 1.8 mm deep) were taken from a small depigmented area above the jaw, and 250 pieces (1.0 mm in diameter, 1.5 mm deep) were taken from the donor site on the scalp.
The donor biopsies were thinner so that they could be completely inserted into the holes where the biopsy pieces were removed in the depigmented area, using fine forceps, without the skin being raised. After one week, they began using the MEL phototherapy three times a week on the transplant areas.
Repigmentation began within 2 or 3 weeks, and at one month was markedly increased. They initially noticed a slight cobble-stoning effect, but that soon resolved.
Four months later, this process was repeated on the next section of the jaw. Within 2 months, the grafts had survived, and repigmentation continued as in the first procedure. By this time (6 months after initial procedure), the first grafts showed excellent repigmentation, except for some hyperpigmentation (darker skin) around the borders.
One month after the second mMG procedure, the process was again repeated on the center of the face (between the lips and nose). Though the repigmentation in the previously grafted areas was quite good, they noticed depigmented skin remained between the grafts at this point.
Six months later, they performed the final grafting on these remaining areas, then for one month, in order to get a more uniform pigmentation, they exposed all grafts to narrow band UVB (NB-UVB) instead of MEL. They still noticed some hyperpigmentation at this stage; however, by 12 months after the first mMG procedure, the skin color had returned to normal.
The treatment has now been used successfully on over 100 patients with stable or progressive vitiligo. The researchers reported excellent color-matched repigmentation and note this to be an “easy and speedy” treatment of vitiligo. They noted that mini-punch grafting with NB-UVB has been used less successfully in the past. Though uncertain, they felt their success rate could be due in part to the differences in the phototherapy protocol. Previous efforts used only a suberythemal dose of NB-UVB, and only after the surgery.
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Research & Clinical Trials
New Paid Study in Encinitas CA!
New Topical Jak Inhibitor Study
for Non-Segmental, Facial Vitiligo
California Dermatology & Clinical Research Institute
561 Saxony Place Suite 102, Encinitas, CA 92024
This study is for a topical treatment for facial vitiligo using a solution with an active ingredient known as a janus kinase (JAK) inhibitor. This class of medications is used to combat overactive immune systems in diseases like rheumatoid arthritis, psoriasis, alopecia areata and vitiligo.
Previous studies have used the oral form of this drug. Topical treatments place the drug directly on the treatment site, reducing the absorbed blood levels experienced with oral treatments.
No insurance is needed. Medication is provided and all costs are covered.
All participants receive the same medication.
Study duration is about 28 weeks and requires 11 total visits to the study site.
Compensation: $50 per visit, not to exceed $550.00.
- Ages 18-65
- Must have at least 2 sq. Inches of facial pigment loss.
This can be one patch or many small patches that add up to 2 sq. inches.
- Must have an active lesion (new or worsening within last 6 months).
For additional requirements, click here:
To participate, or for more information: Contact: Caroline Lois
Email: [email protected] or ph: 760-203-3839
Earn Funding for VSI with Amazon and eBay
Online Shopping Can Benefit VSI!
Amazon Shopping for VSI
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) and VSI will earn fees, based on a percentage of the sale. The more items purchased by members, the higher the percentage!
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.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.
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!
* Vitiligo Support International Inc. (VSI) is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.
Support VSI Through Ebay
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 More About VSI's Giving Works: Click here