State Rep. Morales’s 2021 World Vitiligo Day Celebration Sparks Much-Needed Conversation

ORLANDO, Fla. (FNN NEWS) – State Rep. Daisy Morales’s inaugural World Vitiligo Day celebration at Orlando City Hall Friday embodied the word poignant. From the three governmental proclamations to the strong, brave vitiligo activists sharing their personal stories, the audience was quiet, eagerly absorbing every word.

And who wouldn’t be? Friday’s speakers disclosed that vitiligo’s effects aren’t limited to just odd pigment patterns on the skin. Pigmentation doubles as protection, so vitiligo patients are far more vulnerable to sunlight than those with normal skin.

The cultural consequences go even deeper. People with healthy skin suffer prejudice, so imagine the mental and emotional anguish that comes with odd or incomplete pigmentation. Vitiligo patients endure bullying, being seen as contagious, or being seen as cursed. Some are reluctant to venture out into the world due to those wrong assumptions.

The Voices of Vitiligo

Tonja (pronounced TAHN-juh) Johnson, founder of Beautifully Unblemished, a statewide vitiligo support group, Central Florida Jobs with Justice co-director Denise Diaz, and world renowned Instagram influencer and Central Florida resident Ash Soto shared stories of how their vitiligo began and progressed across their bodies, challenging their very identities. This was especially true for Johnson, who for many years was teased for her dark skin. After developing vitiligo in 2013, roughly 80 percent of her body has now lost its pigmentation. “I lost the skin color I’d finally learned to embrace,” she shared Friday.

Rep. Morales revealed a little-known detail about vitiligo when sharing her story. When the condition first began to appear on her body–especially on her hands–the depigmentation would appear in massive flare-ups, then disappear, and eventually re-appear. Fellow vitiligo activist Kresha Garrett, who has localized vitiligo on the right side of her face, says she experienced the same thing.

Filmmaker, active duty U.S. Navy sailor and confidence coach Li’dya C. Moore brought yet another little-known detail about vitiligo: one can have it from birth. “I didn’t get it at ten or twenty-four…I was born this way,” she said.

Near the end of the night, five-year-old Dallas, who is dark-skinned and was diagnosed with vitiligo at four, spoke the most powerful words of any vitiligo activist in the room. “Don’t say what the bullies say…or what they say you aren’t,” she urged. “You’re all beautiful, and everyone with vitiligo will always be beautiful.” The entire room erupted in applause with a collective “awwwwww.”

Vitiligo Supporters

Elected officials and community leaders from all over central Florida attended to learn more about vitiligo, the “forgotten” disease, as it is known in some circles. Orlando District 2 Commissioner Tony Ortiz read Governor Ron DeSantis’s proclamation, recognizing June as Vitiligo Awareness Month in the state of Florida as well as recognizing June 25th as World Vitiligo Day. City of Orlando Multicultural Engagement and International Affairs Deputy Manager Luis Martinez read Orlando Mayor Buddy Dyer’s proclamation recognizing June 25, 2021 as Florida Vitiligo Awareness Day. Though he wasn’t present to read it, Rep. Morales also received a proclamation from Orange County Mayor Jerry Demings recognizing June 25, 2021 as Florida Vitiligo Awareness Day.

Other guests included Department of Health – Orange County director Dr. Raul Pino; Edmarie Rodriguez, who made history in 2020 as NASA’s first-ever Puerto Rican medical assistant; Asian Pacific Islander American Public Affairs Central Florida chapter president Andrew Jeng; and many others.

The Impact

“This was a great event,” Soto told FNN News in an interview. “[Getting to] share my story and hearing everyone else’s stories…I learned so much myself.”

“I am so overwhelmed,” Johnson gushed to FNN News at the end of the night. “It’s important to be that voice for vitiligo for those who are voiceless…I’m so grateful for everyone who came.”

In her closing remarks, Rep. Morales assured the vitiligo community (both the people present in the room and watching online) that they’re not alone anymore. “Now you have a friend in Tallahassee that will make sure these issues are brought to the table.”

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Mellissa Thomas is editor for Florida National News, part of the FNN News Network. | mellissa.thomas@floridanationalnews.com