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How a Powerhouse Vitiligo Advocate is Making a Difference in Florida and Beyond

How a Powerhouse Vitiligo Advocate is Making a Difference in Florida and Beyond

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Woman with vitiligo smiles at the camera

Whether she’s on the local news, speaking at a dermatology conference or hosting a walkathon for vitiligo, Tonja Johnson’s message is loud and clear—‘there is no flaw in me.’ It’s not only her personal motto but one of the founding principles of her Florida-based non-profit organization, Beautifully Unblemished. After being diagnosed with vitiligo in 2014, Tonja put her professional health experiences to work for those with this autoimmune disease, advocating local and state school and government agencies and showing up for those who are being diagnosed. Here’s her story.

Name: Tonja Johnson
Age: 53
Hometown: Lakeland, Florida
Years with Vitiligo: 9

LD: Tonja, you were diagnosed with vitiligo in 2014, but had experienced bullying because of your skin before that. Tell us about both of those experiences.

TJ: Growing up as a teen, I was teased by my family and friends at school for being too dark. Being teased and not comfortable in your skin at such a young age [is tough]. When you get to the point where you’re comfortable in your skin, and then [you get] diagnosed with vitiligo…[that] was devastating because of the prior struggles with self confidence and self-esteem. It took a  lot out of me. Why me? Took me a while to bounce back—3 or 4 years—some days it’s still a struggle because I’ve lost so much color. The vitiligo has been very aggressive. Founding Beautifully Unblemished really helped me bounce back—I was meeting people that look like me, experiencing the same things—[it pulled] me out of that dark [place]. 

When I was first diagnosed, [I was] in that dark place—not knowledgeable about what vitiligo was and what to expect. When I was diagnosed, the derm said it’s vitiligo and gave me prescriptions and that was it. No literature, no telling me what to expect; just a bunch of prescriptions and [they] said to call if I want to schedule light therapy. I was depressed because of the [vitiligo’s] aggressiveness. I would count my spots. And then I’d wake up two weeks later and there were 50 more spots.

I started covering immediately. As long as it was on my arms and legs it was okay because I could cover that. Once it hit my hands and fingers—[you] can’t wear gloves everywhere. I could still cover, but once it hit my face it just changed everything. I thought, it can’t be in my faceit cannot be there. It was a gamechanger and the depression and suicidal thoughts [began.] I started scraping into my skin to rid myself of these white patches.

[I was] still working in the public sector and had to go to work every day and face people. I had to be stared at, questioned, “Why does your skin look like that?” I started covering, and as I’m covering, that’s a challenge as well—you can’t cover every spot you have. I had to pick and choose—mostly covering my face and ears—[even the] inside of my ears started changing. 

[My husband] and daughter told me, “[you’re] still beautiful”—but I didn’t see that. I thought, I look like a monster. Who is this person? I don’t even recognize her. 

LD: You are still beautiful. You also aren’t covering your vitiligo today. What was the moment that changed your decision to cover?

TJ: The day I uncovered [my vitiligo for the first time,] I was at work, and had gone on my lunch break. It’s hot here in Florida. I was hot and sweating and just started wiping my face because I was sweating. Looking at my hands I saw my makeup [smeared]—I was freaking out. [I remember] leaving that day and feeling so defeated. A couple people that saw me said, “You’re beautiful.” That day I hadn’t brought my makeup. I went home, came back the next day with makeup and coworkers told me I should never wear makeup again. One of the girls in another department was a photographer and offered to do a photo shoot. The next week, I did a shoot right at the job location and have not used makeup to cover my spots since.

LD: Wow, that’s an amazing transformation. Your story was clearly an inspiration to serve others living with vitiligo. Tell us what led you to create Beautifully Unblemished.

TJ: [It came] out of my own frustration and thinking of others—that if I’m experiencing this, someone else must be too. That’s how Beautifully Unblemished came to be. My initial idea was to start a support group set up like AA: Come and meet once a month, sit in a circle, cry and laugh and go home. Today it’s nothing like that—it’s evolved into an organization that’s actually now able to support and give to the community. For example, helping a mom find a dermatologist for her child, [or helping a] senior citizen diagnosed at 80. We’re offering programs and resources for individuals living throughout the state of Florida. We’re the only support group of our kind in Florida.

LD: What are some of Beautifully Unblemished’s programs you’re most proud of?

TJ: Our initiative last year was focused on the mental health aspect of living with vitiligo—trying to help individuals navigate through that. We hosted webinars and an in-person event called Mind My Skin: Creating a Community That Cares. For the event, we invited anyone with a rare skin disorder (psoriasis, melanoma, alopecia) together and had a panel with counselors, clinical psychologists, a local mayor, and state representatives. This year, we’re bringing back the Mind My Skin event. We’re also doing a photo shoot for the youth, [led by] a high school student who has vitiligo. We are looking to collaborate with mental health counselors to get vouchers for those with vitiligo who want counseling and can’t afford it or don’t have insurance to cover it.

LD: Mental health—it’s such an important topic for those with vitiligo. Your work doesn’t stop there though. Tell us about some of your advocacy work and the partnerships you’re building throughout Florida.

TJ: I do advocacy work twice a year with the Coalition of Skin Diseases and American Academy of Dermatologists. We advocate on Capitol Hill in September with dermatologists in the state of Florida and [I get to] tell my vitiligo story. At the local level we are really trying to get Beautifully Unblemished’s information into the offices of all the dermatology clinics. We want [good] information [about living with vitiligo] available on all levels.

I also had the opportunity to work with the Florida Academy of Dermatology as a presenter for their conference in May. I got to share my story, what we’re doing and how they can help us. Some University of Miami medical dermatology students are actually putting together a [vitiligo] toolkit for providers and parents. We hope to have that up and running by January to give it to all of the dermatologists throughout the state of Florida. Some derms only know the basics—we want to [help] keep them up to date [on vitiligo].

Beautifully Unblemished has also been working with school guidance counselors—when they notice a kid who has vitiligo, they give our information to the parents. We hope to get into the school systems where it all starts, to help [young people] as they are diagnosed with vitiligo. 

LD: What advice would you give other vitiligo advocates struggling to balance their work and personal life?

TJ: [Take it] one day at a time, one minute at a time.

I’m really grateful for my daughter—she encourages me to take time for self-care. My heart is in this work, [I love to] get calls and emails [from the newly] diagnosed and struggling. These calls come from all over the world [from people] that are reaching out via email, social media, or someone I meet in the grocery store. [But I also need] Tonja time—[such as] sitting on the beach, listening to the waves. I love interior decorating. If I’m not at the beach, I’m at home doing some type of design work decorating with the seasons. I’m a praise and worship leader at my church—that gets me through a lot of rough times. Singing and giving praise to God through song. That really helps. And I love to travel—haven’t done as much recently but I love traveling and visiting new places and seeing the world.

Learn more about Tonja’s work with Beautifully Unblemished at their website: https://www.beautifullyunblemished.com

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