Talking Vitiligo with Ash Soto and Dr Jo Martin

Ash Soto, a beauty blogger, and Dr. Jo Martin, a dermatologist at Providence Medical Group-Clackamas Dermatology, share their thoughts on vitiligo.

Vitiligo is a disorder in which white patches of skin appear on different parts of the body. This happens because the cells that make pigment in the skin are destroyed. Vitiligo can also affect the mucous membranes and the eye. More than 200,000 people are effected by vitiligo in the United States each year.

It can make life challenging for many people and is often mistaken as contagious, causing additional mental and emotional challenges for those with the disorder.

We sat down with two experts to help you better understand the topic. First, we chatted with Ash Soto, a beauty blogger who was diagnosed with vitiligo at the age of 12, when body image issues are at some of the most critical points in a young woman’s life. Soto has recently become recognized around the world as the woman who turned her vitiligo into a work of art.

You were pretty young when you were affected by vitiligo, and you were in Florida, where showing skin is pretty much an everyday occurrence. Tell us about that time.

As any girl can attest, middle school is an awkward and uncomfortable time. For me, not only were my hormones and body changing, but my skin began to change as well. At first, I was overwhelmed with confusion and fear of the future, unsure of how this condition would change me completely. People can be cruel to those who are different and that is what caused me to dress in full length pants and sweaters year-round.

What kind of treatments have you tried for your condition and what has worked the best?

When I was first diagnosed, I was prescribed steroids in the form of a lotion, which was meant to stop the progression of vitiligo. This treatment did not work for me. I was also told that as I grew up I could choose to go under UV light therapy to repigment my skin. This came with serious health risks and it was something my parents and I decided we were not comfortable with. There is no cure for vitiligo and after my initial steroid treatment and research into UV treatment, I no longer tried to treat it.

As a beauty blogger, you spent a lot of time using and reviewing makeup. Did you get into that to cover up your vitiligo?

In the beginning, I used makeup to cover up my vitiligo. It was another way to hide my differences. When I accepted my condition, however, my makeup took on a whole new meaning. It was a way to express myself through a form of art. I was then able to feel confident in a full face of makeup and also while wearing none at all.

You’ve talked about how your condition gave you social anxiety - so much so that you considered suicide. How did you learn to overcome that?

The biggest step in overcoming my social anxiety was just slowly, but surely, putting myself out there. I did it little by little, gaining confidence every day. I would challenge myself daily - even if it was going to the store with shorts or a tank top on. It may seem little, but for me it was a big deal. I had been covered up for so long that even the idea of showing skin made me nervous. We have one life to live and I knew I didn’t want to live it hiding anymore, I wanted to make my life worthwhile so that’s when my journey to “self love” began.

What motivated you to go from hiding your condition to accepting it to embracing it?

What really motivated me to embrace it was that I knew I didn’t want to be unhappy or sad anymore. The only person that could change that was me, so little by little I kept empowering myself- even if it was writing the words “I am beautiful” on a piece of paper every morning to remind myself and go about my day positively. I knew I wanted to help people, to make a difference and I wanted to be that voice for all people struggling with vitiligo and body issues in general. That’s when everything turned around for me.

Recent research indicates that Vitiligo might be genetic. Have you learned of anyone else in your family having the condition?

I learned that it was possible when I was first diagnosed, but I haven’t learned of anyone else in my family having it. I’m the first to have on full on vitiligo.

You really made a statement with your “Marker Chronicles” – tell us how that came to be and what your future plans include for it.

One day I was just messing around with a marker and I started tracing my arm and I thought it looked so amazing that I kept going until I completely traced my whole body. When I looked in the mirror and saw that I looked like a human map, I realized that I had never felt so empowered. It was truly art to me and it was just the most beautiful thing. Art as a whole is beautiful, but when you mix that with vitiligo it becomes a true masterpiece. In the future, I hope to create more and keep incorporating art in the hopes to continue to inspire others.

What advice would you give anyone, especially young people, living with vitiligo?

I would tell them not to give up, to stay strong and positive. I know that’s the hardest thing to do, but I promise it will get better as long as you believe in yourself. You are a walking work of art and you should embrace what makes you unique. Be kind to yourself and always empower yourself. Surround yourself with positive people and never let what a person says about you control how you’re going to live YOUR life. You are in control of your own happiness. Also, don’t let your vitiligo stop you from ANYTHING. Achieve your dreams and reach for the stars. Never stop fighting for the “self love” you deserve.

Next we chatted with Dr. Jo Martin, a dermatologist at Providence Medical Group-Clackamas Dermatology. We asked Dr. Martin to provide people with more information about vitiligo.

What is vitiligo?

Vitiligo is a condition in which the pigment producing cells in the skin, called melanocytes, are destroyed. It is an autoimmune condition, which means that the immune system, which is supposed to protect you from disease and infection, makes a mistake and attacks healthy, normal cells in your body instead. When the melanocytes are destroyed by the immune system, they are no longer able to produce pigmentation. As a result, the skin develops patchy white areas.

How common is vitiligo?

It is hard to get exact numbers, but estimates range from 0.5% to 2% of the population.

What is the primary cause?

We don't know the exact cause of vitiligo, but we do know that both the immune system and genetics do play a role.

Is it contagious?

No, it is not contagious.

Is it genetic?

Yes, there is a genetic predisposition to develop vitiligo. In particular, genes that are involved in the immune system seem to play a role in contributing to the development of vitiligo. This association with the immune system is probably why other autoimmune diseases are associated with vitiligo, including thyroid disease, rheumatoid arthritis and other conditions. It is relatively common for some family members to have other autoimmune conditions, although they may not have vitiligo.

When does it present?

Almost half of people with vitiligo develop it before the age of 20. Many people develop it before the age of 10. It will typically continue for life.

What are the symptoms?

Depigmentation or hypopigmentation—lightening of the skin—is the first symptom.

Is each case different?

Yes. There can be significant differences in the time that vitiligo appears, the areas that are involved, how quickly it spreads, and how responsive it is to treatments.

What are the treatments?

There are a variety of good treatments available for vitiligo. The approach to treatment depends on the severity of the vitiligo, the subtype of vitiligo, the rapidity with which it progresses, and how the vitiligo is affecting an individual’s quality of life. Treatments range from topical options to more systemic or whole body treatments to surgical treatments. In all treatments, it is important to recognize vitiligo responds quite slowly to treatment, and noticeable improvement may take six months to a year.

Topical steroids or topical calcineurin inhibitors (creams that are applied to lesions of vitiligo) are often used as first-line agents because they are quite safe. These medications reduce the autoimmune destruction of pigment cells. Light treatment or phototherapy (narrowband ultraviolet light B phototherapy, excimer laser), is often used for patients who have more involvement. This treatment helps to stimulate the melanocytes – allowing the skin to make pigment again. Sometimes systemic steroids are used in people who have rapidly progressive vitiligo. There are also some exciting new surgical treatments for vitiligo, though these are not as readily available as other options.

Why is it important to have a good patient and doctor relationship for patients with vitiligo?

Vitiligo is a condition that can lead to significant distress for some patients. It is important for patients to feel that their dermatologist provides a safe and receptive setting for them to be able to discuss their goals of treatment – which will be different for different people. The areas affected, the extent of disease, other medical conditions, and work, community, and cultural factors can all contribute to how a treatment plan is devised. Therefore, it is essential to have good communication between the dermatologist and patient.

Providence St. Joseph would like to thank Ash Soto for being a paid partner with us on this important topic.

Providence is pleased to share the stories of great people who have overcome health challenges. As part of our population health program, we want to share insights and stories that help bring awareness to common health conditions. Not all the people featured in our stories are Providence patients.