About

MORE THAN OUR SKIN is a film designed to incorporate important elements in the telling of this important story.

The Stories

The film, More Than Our Skin will be a documentary exploring in depth the effects of living with Vitiligo through the stories of those who live with it.

Through the personal and often painful stories of the five women featured in the film, More Than Our Skin will provide a deeper understanding of what it means to live with Vitiligo:

  • Stories of falling into deep depression

  • Stories of contemplating suicide

  • Stories of isolation and addiction

  • Stories of death

 

We want the individuals telling their stories to change the narrative of what people think of Vitiligo. We want to eliminate the stigmas by allowing the viewing audience to meet the people who will share their stories of pain and promise along with their communities who have provided support, love, and purpose to these courageous group of women.

 

We are traveling to the homes and communities of each woman portrayed in this film – conducting interviews with spouses, children, members in their community, parents, and friends – along with the women themselves. Often, these interviews are personal and painful – but part of their story to let the viewing audience know how living with Vitiligo affects them individually.

To read more about our creative partners and voices of our film, click here!

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The Advocacy

 

This film intends to answer the very simple question, where do we go from here? To answer this question, we need to start with where we’ve been. In 1975, the National Vitiligo Control Act was introduced. The findings declared that Vitiligo is a disfiguring, inheritable disease which cripples the personality of individuals suffering from it and which afflicts about three percent of the U.S. population. The bill authorized the following funds to be appropriated for such purpose of research and treatment of $2,000,000 for fiscal year 1975, $3,000,000 for fiscal year 1976, and $4,000,000 for fiscal year 1977.

 

Fast forward 40 years, Congressman Hank Johnson (GA-04), introduced H.Res. 213 to designate Oct. 17th as “National Vitiligo Awareness Day.” This bipartisan bill honors the courageous children and adults who while living with this condition, often overcome many different forms of harassment and their own personal issues to fight on and contribute to our society.

 

But we need more. We need more advocacy, more demonstrations, more science, and more resources to bring a cure to a disease that is often misunderstood and mischaracterized as something “cosmetic”: involving or relating to treatment intended to restore or improve a person's appearance. This film will help push the advocacy to the forefront and ask the tough question, why hasn't more been done?

The Research

Another powerful addition to this film is the information of the advocacy, research, and cures for Vitiligo patients. With the help of VITFriends, More Than Our Skin will explore the opportunity to affect changes in Vitiligo Legislation; Insurance Compliance; Support Programs and a b intentional study on the research and cures.

 

This film will unpack the medical mysteries of this disease and talk to experts trying to determine how and why this affects individuals and not others.

 

Dr. John E. Harris, MD, PhD

Dr. John E. Harris directs the Vitiligo Clinic andResearch Center at UMass Medical Center in Worcester, Massachusetts, which incorporates a specialty clinic for the diagnosis and treatment of patients with Vitiligo, as well as a Vitiligo research laboratory. He uses basic, translational, and clinical research approaches to better

understand autoimmunity in Vitiligo, with a particular focus on developing more effective treatments.

 

Dr. Richard H. Huggins, M.D.

Dr. Richard H. Huggins, M.D., a Detroit area dermatologist - was named a division head for his Department of Dermatology in 2018. Dr. Huggins’ clinical and research interests include Vitiligo, hidradenitis suppurativa, and skin of color. A fellow of the American Academy of Dermatology, Dr.Huggins also serves on the board of directors of the Global Vitiligo Foundation and is on the executive board of the V-Strong Vitiligo support community based in Detroit, Michigan.

Dr. David Rosmarin, M.D.

Dr. David Rosmarin is a dermatologist in Boston, Massachusetts and is affiliated with multiple hospitals in the area, including Brigham and Women's Hospital and Tufts Medical Center. He received his medical degree from NYU School of Medicine and has been in practice between 11-20 years.

 

Recently, Dr. Rosmarin conducted a nationwide phase II clinical trial, coordinated out of Tufts Medical Center in Boston, has found that a topical cream was extremely effective in reversing the effects of vitiligo, a relatively common autoimmune disease that causes loss of skin pigmentation. Topical application of the medicated cream, ruxolitinib, which is currently used as an oral treatment for certain blood disorders, resulted in substantial improvement of facial vitiligo symptoms in nearly half of the trial's participants. Results of the clinical trial were presented by David Rosmarin, MD, Dermatologist at Tufts Medical Center and Primary Investigator for the study, on Saturday, June 15, at the World Congress of Dermatology in Milan, Italy.

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What individuals want is very simple: for the world to understand that this condition is anything but cosmetic and what these medical experts are working towards is to give back a bit of one’s own self before the effects of Vitiligo took over. That Vitiligo is More Than Our Skin.

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Valarie Molyneaux
VITFriends President & CEO

I was first diagnosed with Vitiligo in 2002. Not being familiar with the condition and learning there was NOTHING my doctor could do, I was devastated and fell into depression. There was NO support group or people who I could turn to, so in 2004 I started to search the internet for answers. The thought overwhelmed me that I should start a group but I had NO model to follow or ideas of what to do, so I resorted to what I knew, which was PRAYER. And it came to me, create an organization to help others like me find the support, advocacy, and build awareness of what it means to live with Vitiligo!

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Patricia Rossy
Vice President, VITFriends

I see this film as an important vessel for those people who are ignorant to the hurt that this Vitiligo disease causes to the humans affected. I say humans, because of the treatment we are constantly subjected to - as if we weren't human.

Personally, I know this film will empower me and others to speak the truth about how we felt and how I learned to cope once I found

my VITFriends family.

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Alicia Roufs
MN Chapter, VITFriends

I have lived my entire life with Vitiligo, almost a total of 44 years. I lived alone with this pain for so many years. I had no one like me that I could talk to about it until I was 32 years old. I was a child of vitiligo. I was bullied, called names, isolated and alone. 

I want to help be a voice for the children of vitiligo. To help them know that they are okay and not alone. To let them know it gets

better! We need people to listen and understand. This story deserves to be heard! 

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Millicent Meadows
CT Chapter, VITFriends

Many stones have been thrown in my path of life, and Vitiligo was one of them.

 

For years I struggled with self-acceptance, and the affect others perceived of me, such as fear of getting to close or my ethnicity. That alone is the reason why making this film is important. Even though Vitiligo is coming to the forefront on various media sites, it still isn’t enough. Having a collaboration of personal Vitiligo stories in one film will set a precedent.

 

This film will not only educate those unknown to Vitiligo, but will help the individuals with Vitiligo who’s been voiceless, take one step towards self-acceptance. It should be our honor as people with Vitiligo to remain diligent in advocating and educating about this skin disease through different outlets.

 

This film will be one of them. As stated earlier in this letter, there will be many stones thrown in our paths during our lifetime, but it will be up to us how they will be used. 

 

In the end by being a part of this film and hearing my story, I hope to leave a legacy for the here and now and those to come to always stay encouraged, unwavering and resilient. 

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Katrina Christian
NC Chapter, VITFriends

I am so proud to support and be committed to this film, "More Than Our Skin."

 

I believe this film will educate the world on Vitiligo.

 

I believe this film will reveal the social and emotional impact.

 

I believe this film will support individuals with Vitiligo.

 

I believe this film will be instrumental in getting the support from the federal government and the medical community (i.e. funding, FDA approved drugs, finding a cure).

 

And, I believe this film will continue to encourage me to inspire hope in individuals with Vitiligo.