NEW YORK – Stella Pavlides, Founder and President of the American Vitiligo Research Foundation (AVRF) a 501(c)(3) charity based in Clearwater, FL, spoke with The National Herald about her life and the AVRF. Born in Manhattan, she grew up in Astoria where she attended St. Demetrios School.
She told TNH “at age 14 my family moved to West Hempstead and at 18 I got married. I had my son, Gregory, when I was 22 and approximately one year later I got vitiligo.”
She explained that “vitiligo is an acquired skin disorder. You are not born with it. To the best of my knowledge, no one in my family has vitiligo. It can strike anyone at any time of his or her life. It is also considered to be a genetic disorder. It does not discriminate. There are over 75 million people of all ethnicities affected by this life-altering skin disorder worldwide.
“Being a daughter of Greek immigrant parents it was devastating when I was diagnosed. They were both heartbroken when they were told that there was no cure. My father was born in Pontus, and my mother in Smyrna. Greek parents are extremely protective of their children and want only the best for them. I was seeing a doctor at Yale at the time and he told me about a charity that focused on helping those affected by vitiligo. I joined and began working on raising money for research. I did raise some money, but when I was told that they sponsored research on animals, I asked if they would consider not doing so. I was told ‘no.’ So my adventure began.
“I asked Dr. Thomas B. Fitzpatrick who was the chair at Massachusetts General Hospital in Boston, if it was necessary to use animals for effective research for vitiligo and he told me no. I asked my parents for some of my inheritance and the American Vitiligo Research Foundation Inc. (AVRF) was founded in 1995. To date we are the only humane vitiligo charity worldwide. I run the charity alone, but my son does help me whenever he can. The charity is based out of my home.” She said the late Dr. Fitzpatrick was like a father to her.
“The AVRF has sponsored around $217,000 in research to date. It is quite difficult to raise money for this disease, since people ask if it is fatal and once they hear that it is not, they usually lose interest in supporting us. The most challenging thing I have faced all through the years is that no one truly understands how emotionally devastating vitiligo is, especially for children. They suffer from peer pressure, bullying, rejection, and so much more. We at the AVRF have suffered some suicides due to some of our members losing their self-esteem to the point of ending their lives.
“If I could relay one thing it would be the fact that we live in an aesthetically oriented society and as hard as we try to accept our vitiligo, most of the public does not. People look at us as though we have leprosy. It is very disfiguring and I myself suffered emotionally and spiritually for many years. Finally, I did accept my vitiligo. When I first acquired vitiligo, and I would go shopping, many times they would not take money from me, due to the appearance of my hands. They are literally two colors; my natural color with white patches. As time went on, I grew to ignore the staring, whispering, and pointing. I remember at one of the AVRF conferences one of our children, Nadajiah came up to me and said, ‘Miss Stella, you told us that God created us and we should not be ashamed of how we look.’ I replied that she was correct and she continued to say, ‘then why do you always wear long sleeved tops, long pants, and shoes with socks?’ I was amazed that a child realized that I was saying something other than what I was living. At that moment, I made a commitment to Nadajiah that I would dress appropriately according to the weather and I have.
“I have been to Greece, Jordan, and Kenya among other countries and have met and spoken with many individuals who also have vitiligo. Their take is quite different than ours in the United States. They are more inhibited due to their culture. We in the U.S. tend to be more vocal about our feelings and we stress diversity and in other countries diversity is unheard of.
“I have received numerous awards and many letters from well-known dermatologists regarding my credibility, but money for research is still lacking. I have a binder that weighs over 9 pounds full of accolades about my work and the AVRF. Former Congressman Michael Bilirakis has written about me and the AVRF in the Congressional Record; also (his son) Congressman Gus Bilirakis has awarded the AVRF commemorative coins from Congress and has attended some of our conferences. I have the privilege of working with one of the world’s greatest scientist based at Massachusetts General Hospital, Dr. David Fisher, the dermatology chair and he believes he has a good chance to end the suffering of those affected by vitiligo by either finding an effective treatment or the cure. The only thing inhibiting this from happening is the lacking of funds.
“The AVRF has started a program in 2007 where our children ‘pay it forward.’ Each year thereafter we would buy gifts for children in other charities, elderly people in nursing homes, homeless people… We still do this each year and I pray that the AVRF children learn to continue giving to those in need.
“It is my dream that someone who is reading this will be inspired to meet with me and hopefully consider meeting Dr. Fisher and help with research funding. If I could have one dream fulfilled, it would be that someone reading this story and has the ability to make a donation in any amount they would do so.
“We also create a children’s Embracing Diversity calendar each year where children and their parents talk about how their lives have changed after being diagnosed with vitiligo. I had no idea what a positive impact the AVRF has had on these children, but again I am one person. Please help me leave a legacy to our future generations by hopefully having our researchers find a good treatment or better yet the cure. Thank you from my heart to yours and may our Lord continue to bless each and every one of you.”
She also spoke about her father, Gregory, who worked his way up to maître d’ at the Stork Club, which operated from 1929 to 1965, communicating with owner Sherman Billingsley through hand signals, and meeting every celebrity of that era including Frank Sinatra, Ethel Merman, and Josephine Baker, among many others. Pavlides noted that her father was the most generous man.
She follows his example, and also teaches the children involved in AVRF to “pay it forward,” by helping others through community service, visits to nursing homes and children’s hospitals where they deliver teddy bears to kids undergoing cancer treatment.
On October 20, Pavlides and AVRF with National Vitiligo Bond Inc Foundation CEO and Founder Natasha Pierre McCarthy and many others participated in the first ever Vitiligo Diversity & Inclusion Awareness Walk across the Brooklyn Bridge. The discrimination many people face due to vitiligo can be devastating, especially for young people.
More information about vitiligo and AVRF is available at avrf.org.