UNIQUELY BEAUTIFUL

Every year on the 25th of June, World Vitiligo Day draws attention to the condition of the skin, Vitiligo, in which white patches develop throughout the body due to the loss of melanin (a skin pigment). For Vitiligo, melanocytes, which are cells that produce pigments, are damaged by autoimmune conditions.

The disorder is more noticeable in individuals with darker skin tones or those born in African and Asian countries. The social impact of the disease is destructive because people living with the disease are often not accepted. So this day is used to draw attention and raise awareness and reduce the stigma of the disorder.

The theme of this year’s World Vitiligo Day was “Mental and Medical Journey of Living with Vitiligo- The Journey Starts with ME!” The purpose of the theme is to illustrate the psychological and emotional well-being of people who experience this skin condition. People with this condition encounter mental health issues such as anxiety, depression, and self-esteem.

A three-day event took place in Houston, Texas which, witnessed 300 patients, advocates, dermatologists, and families.

Some top moments from the year 2019.

• Coming Together

Maybe nothing caught the passion and joy of the Vitiligo community better than the collective photo on the steps of the Sugar Land City Hall. On a warm, sunny, and humid morning, more than 300 people gathered to take a group photo shot by photographer Rick Guidotti. The time wasn’t over without the ‘snap’–followed by applause and laughter.

• Lived & Heartfelt experiences

Throughout the event, individuals with Vitiligo spoke about their personal experiences with Vitiligo–both as part of the event and through intimate personal discussions. For some, the Vitiligo path is just beginning as one 89-year-old woman has just been identified in the past year. For others, they can’t remember the moment they didn’t have Vitiligo. And for many, being part of the World Vitiligo Day conference was the first time they had been part of any kind of community for Vitiligo. Patients talked about the struggle to live with Vitiligo and the courage they found to embrace their skin.

• Treatments

As new research on Vitiligo and three clinical trials are underway, the future of Vitiligo is bright. “I have been in service for 28 years,” said Dr. Amit Pandya, a dermatologist at the University of Texas Southwestern Medical Center. “For many years, trying to convince a corporation or someone to do work [for Vitiligo] has been like talking to a brick wall. But in the last five years, I’ve had so many businesses coming to talk to me about research.” But while new and better therapies are around the corner, physicians have their sights set on the ultimate goal. “A cure is something that you take once, and that’s it,” said Dr. John Harris. “That’s our constant goal, and I think we’ll get there.”

• One Voice

Is it a condition, illness, or disorder? This year, the words we use to describe Vitiligo have become a hot topic in the Vitiligo community. During a two-hour discussion panel, patients shared their personal experiences on how they respond to Vitiligo and why. For some, the word “disease” carries a stigma that can cause an emotional toll and negative reactions. Terms like “condition” may be easier to accept mentally and emotionally. For others, it is important to focus on Vitiligo as a disease to raise awareness of the need for treatment and insurance coverage.

• Acceptance

First and foremost, you must accept the Vitiligo of your child before anyone else does. Your opinion will set a bar on how others see and treat them. Second, inspire your child with understanding and knowledge and be open to answering any questions they may have. It is important to be open to thinking about Vitiligo with your child, as ignoring positive conversation will lead to guilt and withdrawal. In other words, denying Vitiligo just makes it harder to live with it. Lastly, be a positive example because your children watch what you’re doing and listen to what you’re thinking about their skin and your own body and appearance.

Don’t settle for anything less. Winnie Harlow is a major inspiration for the entire Vitiligo community, and we admire her!

The cherry on top: World Vitiligo Day 2020 was announced by the Global Foundation from June 26-28, 2020, in Minnesota.