Dear VSI Members, Friends, and Donors,

Each year as I compose my year-end message, I reflect on the year’s developments, events, news, etc., in a vitiligo “state-of-the-year” sort of way. While the work of research, advocacy, and awareness in the world of vitiligo most definitely continued this year, it may have seemed, like so much else in the world, to be lost in the background.

2020 was a year of change, modifications, and adaptation. There were new words and terms, like “Zoom,” social-distancing,” “super-spreader,” and “flattening the curve.” But there were many more we thought we knew that took on new relevance, such as ”virtual,” “self-isolating,” “quarantine,” and “herd immunity.”

During this time, VSI continued our national advocacy efforts; kept our investigative ear to the ground; produced and circulated our top-rated quarterly e-newsletters, delivering the most reliable, accurate and current vitiligo news to you, our worldwide membership; and assisted recruitment efforts for a wide variety of vitiligo clinical trials. We continued taking daily phone calls and emails from, and providing support to, those seeking our services and resources. However, the “elephant in the room” (COVID-19) was always there.

2020 was filled with a pandemic, isolation, politics, violence, doubts, and fears.

Will 2021 be magically better because it’s no longer 2020?
That, my friends, is up to you and me. Only by the collective efforts of us all will 2021 be better.

Stand up. Speak up. Give respect. Expect respect.

Have sincerity of purpose. What does that mean?
A sincere person is honest, ethical, and selfless.
Sincere actions come from the heart without expectation of return.

Educate yourself. Open your mind. Accept responsibility. Be a part of the change.

Be hopeful.

Don't make resolutions. Make a difference.

Together we can!

In the words of long-time VSI supporter Rita Byers:
"Although the whole world is facing the Covid-19 pandemic,
vitiligo remains a real and debilitating disease."

I’d truly hoped that by now we could have increased our bandwidth to the extent that we would be in
a position to provide more resources to more people, but 2020 was not the year for that to happen.

As far as we’ve come;
Vitiligo remains in the shadows of other more successfully-funded diseases.

If you look at the more successfully-funded diseases, you’ll find one thing they all have in common:
The support of a strong non-profit advocacy organization.
And the one thing all of those patient advocacy organizations have in common:
The unified support of their community.

Sincerely,

Jackie Gardner
Executive Director

As we head into the New Year, many of our children will be returning to school in one manner or another. I think we’re all hoping that 2021 will bring many positive changes. Keeping our children safe, healthy, and happy at school has never been more important.

A recent research study on the topic of bullying and childhood skin conditions was conducted by pediatric dermatology and psychology specialists at the Dell Medical School at the University of Texas in Austin. This study found that nearly half of all pediatric dermatology patients reported a history of bullying, and specifically mentioned that children with vitiligo in highly visible areas such as the face and arms were at an increased risk of bullying when compared to children with other chronic childhood diseases, illustrating the importance of early screening among these children.

Targeted students are typically different from their peers in some way, such as unique or different physical appearance, wearing glasses, different or “uncool” clothing, or having physical or emotional disabilities, special needs, or different religious beliefs, with a recent trend toward bullying of Muslim-American students.

The Study Listed the Following Risk Factors
to be Associated with Childhood Bullying

• Chronic illness
• Physical disability
• Different appearance
• Underweight
• Overweight
• Learning disability
• Behavior problems
• Poor family functioning
• Lack of close relationships
• Low socioeconomic status
• Family violence
• Physical abuse
• Sexual abuse
• Emotional abuse
• LGBTQ+

Where Does Bullying Occur?

Bullying can occur during or after school, in classrooms, hallways, stairwells, bathrooms, cafeteria, or outdoor common areas such as on playgrounds, buses, or bus stops. However, it most often occurs in areas and situations with little or no adult supervision.

Cyberbullying, which occurs electronically, can happen anytime, day or night. In addition to texting or private messaging, this type of bullying has the potential for a far greater outreach by occurring on social media sites and chat rooms.

What and When is it Bullying?

Not all problems or disagreements are the result of bullying, as all children argue, make poor behavior choices, and/or experience conflict from time to time. Bullying is defined as unwanted, intentional, repeated, and aggressive actions that inflict physical or psychological distress.

Three Primary Characteristics that set
Bullying Apart from Conflict

• The abusive behavior is chronic, occurring day-after-day.
• The bully is successful due to a real or perceived power imbalance typically occurring because
  the bullied target is smaller, younger, or less socially capable of coping or defending.
• The bully clearly enjoys seeing their target afraid and upset, indicating the intent to cause harm.

Characteristics of Bullies

Bullies are not always bigger, smarter, or stronger than their targets. They often come from troubled homes with less parental involvement, and may have difficulty following rules and addressing behavior challenges, becoming easily frustrated and aggressive.

There are two Basic Types of Bullies:

1. Those seeking higher social status
2. Those who target vulnerable victims

Those motivated by social status target their own friends and other more popular students.
Those who target more vulnerable victims are generally less popular themselves. They may be anxious and/or depressed and try to make themselves feel better by targeting less popular students.

Males more often bully in physically aggressive ways.  However, females more often use verbal, social, and cyber-bullying.

Signs and Symptoms of Bullying

One of the most common negative effects on the targets of bullying is the belief that the bullying is their own fault, which can result in lowered self-esteem. Be sure your child knows that it is not their fault. Bullying behaviors are the result of the problems and insecurities of the bully.

Bullying can cause feelings of anger and frustration as well as helplessness. Other symptoms to watch for include changes in mood or behavior (such as acting out at home or at school; a drop in grades or academic performance, loss of interest in school activities, avoiding school, headaches, abdominal pain, bedwetting, appetite problems, vomiting, and sleeping difficulties.

Bullied children have a higher risk of substance abuse and are also at risk of long-term problems extending into adulthood, such as depression, anxiety, agoraphobia, and panic disorders, making early identification and diagnosis all the more important.

Research has shown that very few bullied pediatric dermatology patients have been asked about bullying by a medical professional. Because the children rarely disclose the information on their own, it’s important for parents to be aware of the potential for problems, and to know what to look for.

What You Can Do if Your Child is Being Bullied

Unfortunately, parents can’t always be with their children. But there are ways you can help prepare them for difficult situations and improve their coping skills. Talk to your children, keeping the lines of communication open and letting them know that they should never be afraid or embarrassed to ask an adult for help. It’s important that they can trust you and know they can always come to you to discuss problems, and that you are there to listen, help, and not judge.

Below are a few strategies that can help your child learn how to respond when bullied.

• Look the bully in the eye
• Stand tall and stay calm
• Walk away
• Do not respond to any unwanted electronic messages
• Show bullying texts or messages to a parent or other trusted adult

Teach your child to respond in a firm voice, with messages such as:

• "I don't like what you're doing."
• "Please don't talk to me like that."
• "Why would you say that?"

These skills will not likely come naturally. Much like learning a foreign language, lots of practice at home will help the responses to come more naturally during the heat of the moment.

Other Ways Parents Can Help

Encourage your child to make friends. Recommend that they invite friends home to play, or to go out for an activity, such as bowling or to see a movie. Suggest that they participate in supervised activities they are interested or skilled in, such as team sports, music groups, or social clubs.

Supervise online time, especially social media sites!

Document and report all bullying to school officials or those in charge where the bullying takes place. Because bullying often occurs outside of the classroom, speak with the principal and/or guidance counselors, playground monitors, and your child’s teacher. Work together on solutions.

Almost all states now have anti-bullying laws and policies. To see your state’s regulations, click the link below, then scroll to the bottom of the page to browse state-by-state.  Laws, Policies & Regulations: StopBullying.gov

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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.

Medicare has agreed to meet with us – but requires that we bring Medicare letters of denial for a vitiligo treatment.

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

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What's On Your Mind?

Alpha-Lipoic Acid - Side Effects – Vitiligo – Thyroid Supplements

Q. I have Hashimoto’s thyroid disease and have been taking a compounded medication for it
for several years. A couple of months ago my dermatologist recommended that I start taking an antioxidant supplement called alpha-lipoic acid (ALA) with my daily meds.

I looked it up before I started taking it and it seems to have a lot of health benefits that would be good for vitiligo. However, on my most recent lab work from my endocrinologist, my thyroid levels were off. For some reason my T3 seems to have dropped quite a bit. I am now wondering if the ALA could be responsible.

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Medical News Updates

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

NB-UVB linked to Lower Fracture Risk

A group of Korean researchers noted that even though Narrowband UVB phototherapy (NB-UVB) is the primary treatment of vitiligo, some patients are still reluctant to use it due to safety concerns.

In an effort to dispel these fears, the researchers used Korean National Health Insurance claims to carry out an 11-year propensity score-matched study comparing the fracture incidence rates for 3678 vitiligo patients who received fewer than three NB-UVB sessions to 1839 who received at least 100 treatments.

Research has long shown the benefits of Vitamin D for bone health and fracture prevention. The study authors explained that, while sunlight has always been a significant source of Vitamin D, it contains multiple wavelengths of light, some more helpful than others.

The fact that the UVB wavelength most effectively synthesizes vitamin D in our bodies may play a role in the added health benefits of reduced fractures.

The data comparison showed that the incidence rate for all fracture types was 24% less for the group with the higher phototherapy exposures. They recommended that doctors reassure their vitiligo patients about the safety of NB-UVB phototherapy and encourage them to use this treatment method.

Can You Catch COVID from the Sweat of an Infected Patient?

Researchers in Iran recently carried out a study to determine if sweat from individuals infected with COVID-19 (C-19) could transmit the virus. They noted another study of 212 people infected with C-19 that reported profuse sweating experienced by 114 patients, and 102 reporting night sweats. Their concern was that if sweat does in fact contain transmittable levels of the C-19 virus, then there is the potential for producing a high volume of infectious substance.

The study included 25 patients (15 male/10 female) ranging in age from 24 – 48 years. All participants had positive PCR tests, and were experiencing clinical features associated with a high viral load including fatigue, fever, and low blood oxygen.

They began by disinfecting the patient’s foreheads with 70% ethanol, then having them exercise enough to make their bodies sweat. Afterwards, medical swabs were used to collect sweat samples from their foreheads. Then, using strict transport protocol, the samples were transferred to the lab where they were tested using the “Real-time PCR” test.

Results

All 25 samples tested negative for the presence of C-19 virus,
indicating the sweat was not infective and considered to be safe.

Can Sweat Help Prevent the Coronavirus?

Dr. Adam Friedman, Professor and Interim Chair, Dept. of Dermatology at The George Washington University, was recently asked what, if any, role sweat might play in the transmission of the coronavirus. His response, for those who enjoy working out in the gym, might make you feel better.

Dr. Friedman relayed the following: “Sweat has some inherent antimicrobial activity. The sweat nitrate becomes acidified when it hits the skin, generating nitric oxide, which is one of the most potent broad-spectrum antimicrobial agents. In fact, gaseous nitric oxide is being currently studied as a potential treatment for some of the severe complications related to COVID-19."

Whether or not sweat will prevent the transmission of the COVID-19 virus, it certainly will not make transmission any easier. According to Angela Ballard, RN, EMT: “Perspiration would need to become mixed with virus-laden respiratory droplets or mucus from an infected person and then come into direct contact with another person's mouth, nose, or eye mucous membranes in order for a sweat-borne COVID-19 infection to occur.”

While sweat may not transmit the Covid-19 virus, depending on the environment (temperature, type of surface, space etc.) virus-infected respiratory droplets can live for hours and even days, on surfaces that others touch. Consequently, they both still stress the importance of social distancing in warm, indoor places like the gym or subway.

Conclusion:
There is no scientific evidence to support that sweat alone can transmit the COVID-19 virus.
Some experts think that sweat may actually help prevent a COVID-19 infection.

VSI would like to thank the International
Hyperhidrosis Society for the above report.

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Research & Clinical Trials

FDA Reschedules Vitiligo Event!

Good News! FDA - Vitiligo Public Meeting Rescheduled You may recall announcements several months ago regarding the first ever FDA “Patient-Focused Drug Development Meeting” (PFDD) for Vitiligo that was originally scheduled for March 30, 2020 in Silver Spring, MD. Unfortunately, due to COVID-19 the meeting was postponed. However, the FDA has now announced the new date and time for the meeting, which will be held in a virtual (online only) format. Please save this date and time to attend the important meeting. March 8, 2021 10 a.m. - 2:30 p.m. EST The purpose of this meeting is to personally connect FDA members and a wide representation of medical and industry professionals with vitiligo patients and caretakers, and to learn about the impact vitiligo has on daily lives, as well as to hear patients thoughts on treatments and managing vitiligo. Additional information about the meeting can be found on the meeting webpage, which will be updated as meeting materials are developed. Registration will be available closer to the meeting. VSI will make the information available on Facebook and our Community page as it becomes available.

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