Tonja Johnson details her life with vitiligo
For the last eight years, Tonja Johnson has learned to love herself and see her beauty no matter what shade of skin color she has.
She has vitiligo – a condition which has gradually taken away her pigmentation and left her with patches of discoloration all over her body.
It started in 2011 when she first noticed a small, white spot on her leg that didn’t seem like anything to be concerned about, but over time it began to progress, Johnson said.
“The first few spots were gradual, but once I was diagnosed, my color just disappeared like wildfire,” the Plant City native said. “It was very aggressive.”
When her physician gave her the news about her condition, she was 44. Now at 52, she has lost the vast majority of her pigmentation, with only parts of her legs still showing her natural, brown skin color that once made up her entire body.
Vitiligo is a life-long condition which affects an estimated 3.7 million Americans, 100 million people worldwide, and has no known cure, according to the Vitiligo Research Foundation.
What is known about its formation is that an “obscure triggering event” causes stress in the pigment-producing cells of the skin, called melanocytes, the research foundation says. The immune system mistakes these stressed-out cells as intruders and in turn, begins to attack and destroy the melanocytes. However, the disease itself is not life threatening nor contagious. It affects all ages and skin types but is more noticeable on those who have darker complexions. While those with this condition all have patches on the body, the way they spread varies from person to person.
The two different types of vitiligo are nonsegmental or generalized, and segmental.
Nonsegmental vitiligo is the more common type as the white patches appear symmetrically on both sides of the body.
Segmental vitiligo occurs when the white patches appear only on one segment or side of the body. This typically develops at a young age and usually stops spreading after one to two years.
The Vitiligo Research Foundation also states that genetics can likely be a factor and that the disease is often diagnosed with those who already suffer from autoimmune illnesses such as:
• Thyroid Disease
• Addison’s Disease
• Type 1 diabetes
• Lupus
• Rheumatoid arthritis
• Alopecia
Johnson herself, is a diabetic and has Graves’ disease, a type of thyroid disease.
Although the disease doesn’t cause any physical pain, she said that she can’t stay out in the sun for extended periods of time because without pigment on the skin, she is more susceptible to getting sun burn.
However, there is an emotional and psychological pain that comes along with vitiligo.
“I went through a period of time, when I was first diagnosed, of suicidal thoughts,” Johnson said. “It was hard being able to look at myself in the mirror every day and find (myself) beautiful.”
While she noticed the disease literally progress every day, her husband, immediate family, and church, all continued to reassure her that she was still beautiful even though she felt it was diminishing.
Her dark moments in life motivated her to assist others who were feeling the same trauma.
In 2018, Johnson founded Beautifully Unblemished – a support group for those suffering from vitiligo.
“From my pain, my passion and my purpose became alive because now I’m helping other individuals that are living with vitiligo, have a better quality of life,” she said.
The demographics of the group vary as it’s made up of both men and women as well as different races. The ages of the group members are across a long spectrum with the youngest being 4 and the oldest being 80.
Although some children are too young to comprehend their condition, it’s the parents who have anguish and sometimes feelings of guilt, Johnson said. She encourages parents to speak with the school principal before a new semester begins and find a way to educate the other students about the condition in order to deter any bullying.
“We’ve had some powerful conversations with the little ones dealing with this at school,” she said. Johnson said that she has experienced discrimination in public based on her looks and will see people staring at her and whispering.
Although it wasn’t malicious, but people not being educated about her condition, she still felt marginalized, and she had days where she contemplated going outdoors or staying inside. Johnson also said that she was frustrated and feeling her identity as an African American woman was being taken away from her.
“Now to have lost my color, that I struggled so hard to love, it’s just taken it to a whole different level that ‘okay, I have to love me for who I am. I don’t want to be that 15-year-old that was struggling because my skin was too dark (and) I don’t want to be that 52-year-old now that’s struggling because it’s too light…so I have to find a balance.’ Now I’m in a place where I’ve embraced my skin,” she said.
Typically, she’ll briefly explain her condition when introducing herself to others for the first time, to take away any awkwardness and encourage those in her group to become comfortable around others.
“It can be difficult for someone who’s maybe not an extrovert,” Johnson said. “Maybe they’re an introvert and they’re getting the stares – people looking or questioning ‘did you get burned?’ We talk about those instances, what you can do and how to protect yourself.”
Group members who are single have also expressed their fear of not being able to find a significant other because of how they look.
Johnson is also a strong advocate in physicians not only diagnosing the problem, but taking it a step further and helping to educate the patient about what they have and to refer them to support groups.
Beautifully Unblemished started in Central Florida and began to branch out into other regions of the state. The organization is currently planning on offering its services to those in South Florida.
The group meetings have been somewhat of a safe haven for those with vitiligo and has helped them shed the additional clothes they put on to hide their patches, she said.
June 25 is recognized as World Vitiligo Day, which was initially created by a Nigerian woman in 2011.
The first local Vitiligo Awareness Walk is set to begin on Sept. 24. and will be held at the Al Lopez Park, 4810 N. Himes Ave., in Tampa.
“It’s going to be a day of celebration, so we’re going to be celebrating those individuals that are living and thriving, and even those that are not living and thriving,” Johnson said.
For those who have not registered online, they can do so from 7:30 a.m. to 8:30 a.m.
The walk will begin at 8:30 a.m. after a welcome and introduction is given.
Aside from lively music, there will be numerous vendors and BayCare hospital will be on site to offer health screening.
The event will be inclusive to those with and without vitiligo.
To register for the walk, volunteer, or sponsor the function, visit www.BeautifullyUnblemished.com.
She still strives to help others struggling with vitiligo to join the group and hopefully gain peace of mind.
“If you allow it to get the best of you, you’re going to live a defeated life,” Johnson said. “My biggest motto is ‘I have vitiligo, it does not have me.’”
