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Lee Thomas Shares His Vitiligo Journey: ‘I Am Not My Disease’

As a broadcast television personality, Lee Thomas was comfortable having all eyes on him.

That was until age 25, when he was diagnosed with vitiligo – and the pigment in his skin began to disappear. The stares from strangers were everywhere: at the gas station; at the grocery store. Some people wouldn’t shake his hand.

Initially Thomas felt hurt – and confrontational.

But he didn’t like what was happening to his personality.

“I started to let this disease turn me into something that I was not,” Thomas said. “I could not stand it. I’m that happy-go-lucky kid … this disease was turning me into something different.”

Vitiligo – pronounced “vit-ill-eye-go” – is a chronic disorder in which skin cells begin to lose color. It is rare and affects people of all races. There is no cure. Michael Jackson had vitiligo, as does model Winnie Harlow, actor Jon Hamm and comedian Steve Martin. Because vitiligo is so rare, people with the skin disorder are often embarrassed or uncomfortable in their own skin. Rude reactions from others can cause people with vitiligo to develop low self-esteem and depression.

Thomas has been through a 25-year journey to accept his ever-changing skin and to thrive in it. Thomas radiates happiness – proof of his emphasis on staying positive to maintain his mental health.

As an entertainment reporter with Fox 2 News in Detroit, Thomas interviews celebrities for a living.

“It’s easy to look at someone from the outside and say, man, they’re living their best life,” Thomas said. “My job seems like it’s a perfect life. But behind the scenes, I’ve always had to deal with this.”

Thomas spoke about living with vitiligo and his journey to acceptance to Blue Cross Blue Shield of Michigan employees on Jan. 22. His appearance at Blue Cross was coordinated by the Diversity and Inclusion department and is one of the numerous sessions that are held for employees throughout the year to learn about different cultures, communities, generations, work styles, and perspectives. His message of self-awareness, acceptance of self and others, and education resonate with the Diversity and Inclusion team’s Be Inclusive campaign to learn about, recognize and embrace individual identities.

As he started his journey, instead of becoming angry at the way people reacted to his appearance, Thomas tried being patient: pausing in the moment to understand the perspective of the other person.

“I couldn’t allow myself to become angered, or a shut-in, or a person who didn’t deal with people – because that was my chosen profession,” Thomas said. “I had to be patient.”

The energy each person brings to a situation is powerful, Thomas said, explaining how he chooses to manage his thoughts to stay positive.

“Try to control your thoughts and manage your thoughts,” Thomas said. “Let it linger for five minutes – and see if there is something I can learn about what I did.”

Now Thomas spreads awareness about vitiligo and more recently started sharing how he has been able to overcome the mental hurdles to stay positive and keep negative interactions from affecting his life.

“I am not my disease. I am just a guy who has it,” Thomas said.

 

Photo credit: Monica A. Drake

Coronavirus and vitiligo

Are people living with vitiligo at greater risk of contracting the coronavirus? Well, Dr. John Harris, associate professor and director of the vitiligo clinic and research center says the answer is no.

Many are asking me whether individuals with vitiligo are at higher risk for contracting the novel coronavirus, COVID-19, which is responsible for an ongoing pandemic. In general, the answer is no. I figured that I would take the time to write this blog while I and my family are “socially distancing” ourselves in order to slow the spread of the pandemic in our little part of the world. So, we’re stuck in our house and thinking about everyone out there who is worried about what this pandemic means for them and their loved ones.

Vitiligo is an autoimmune disease of the skin, which means that someone with vitiligo has an immune system that is malfunctioning in a small way. The normal role of the immune system is to protect you from infections and cancer. Just like any trait that you may have (height, weight, hair color, etc), your genetic makeup can influence the quality and strength of your immune response. In vitiligo, the immune cells are attacking the melanocytes, or pigment cells, even though the cells are not dangerous.

So just like some people are very tall, some are very short, and most are somewhere in the middle, some people have an immune system that is very strong in one area, very weak in an area, or somewhere in the middle. Individuals with vitiligo have an immune response that is too strong against their melanocytes, which results in these normal cells being killed and white spots appearing where that happened because they can’t make pigment anymore. This is actually good from one perspective because it means they have a lower risk of developing melanoma and other skin cancers (that’s what that part of the immune response is supposed to be doing – protecting from melanoma). So that “malfunctioning” immune system is causing white spots on your skin, but also decreasing your chances of getting skin cancer – I guess whether this is “good” or “bad” depends on your perspective.

But in any way you look at it, it doesn’t mean that your immune system is weak because you have vitiligo. It actually means that it’s a little too strong, so you are most likely NOT more susceptible to coronavirus or any other virus. Some of my patients report that they get fewer infections than their friends and family, and this may reflect the fact that the immune system is a little overactive. But just because the immune system is overactive in one small aspect (against the melanocytes), it doesn’t necessarily mean that it’s strong in every aspect, so everyone is probably a little different. But overall the take-home message is that having vitiligo does not mean your immune system is weak, or that you are more likely to get an infection.

Of course, there are always exceptions to the rule. In very rare cases, patients get autoimmune diseases because their immune system has a more significant malfunction that can make it more likely to get both vitiligo (or other autoimmune diseases) AND infections. This is not the case for most people, and if you had one of these syndromes you would probably know it by now. One example of this is Common Variable Immunodeficiency Syndrome (CVID), and I have only seen one or two people with this in my entire career. So again, this is very unusual, and we’re not sure why the immune system works this way in those individuals, but most of those with vitiligo do NOT have this.

Another caveat to think about is when vitiligo patients are using treatments to either prevent the spread of their disease or to reverse it. Most of these medicines suppress the immune system in some way since the central cause of vitiligo is autoimmunity or overactivity of the immune response. In fact, that’s why they work. Many are using topical ointments or creams, and these have a VERY low (or NO) risk of affecting your ability to fight infections, since very little, if any, of the drug goes beyond the skin. In addition, many are using narrowband UVB light treatments, which again only affect the skin and this is no more dangerous than going out in the sun (actually much LESS dangerous, but that’s another topic).

Some people are taking low dose oral steroids, which we use to stop the spread of vitiligo in those who have very active disease. I usually use dexamethasone taken only 2 days per week for about 3 months because it seems to work very well and has no side effects for most people. In theory, this could have an effect on the immune system even beyond the skin, because it’s taken orally. However, practically we haven’t seen increased risks of infection in patients taking it this way, probably because it is such a low dose. Because it is so well-tolerated, we like to use it when necessary.

Finally, some patients are taking newer medicines either off-label (when drugs are FDA-approved for one disease but used for another) or as part of a clinical trial. Examples include the new JAK inhibitors, such as Xeljanz (tofacitinib) and Jakafi (ruxolitinib), as well as some newer versions that don’t even have real names yet. Again, the ones used topically don’t appear to have any effect on the immune system outside the skin. A few people are taking oral JAK inhibitors for vitiligo, either Xeljanz off-label or newer medicines in a clinical trial. To be completely honest, we don’t yet know how these medicines will affect responses to infections like coronavirus. They are somewhat “targeted” meaning they are not just suppressing the entire immune response, they are affecting just a part of it, the part that is causing autoimmunity in vitiligo and other diseases. But we do not yet know every detail about how the immune system works, so we are working to improve this understanding. To make things even more complicated, some doctors are actually using JAK inhibitors to treat those with severe coronavirus infections, since it appears that the most severe symptoms are from an overreaction of the immune system to the virus, which injures the lungs. So these drugs may even help those who are infected in some way.

In summary, in most cases, you are not at a higher risk of getting COVID-19 if you have vitiligo. If you are taking medicines for vitiligo and are still concerned about how it may affect you, talk to your doctor. And as we tell everybody, please do your part to prevent the spread of the virus during this pandemic, by washing your hands, not gathering in large groups, and meeting with people over the phone or videoconference instead of in person when possible. There are 3 things that affect the spread of the virus:

  1. how many people have it today,
  2. how many people that they come into contact with each day, and
  3. how quickly the virus is able to spread.

You can affect two of those variables by limiting contact with others and washing your hands regularly.

We’ll get through this, but we have to work together and support each other. We in the Vitiligo Clinic and Research Center are thinking about how we can help with this. In line with UMass policy, we have stopped our research for a few weeks. Don’t worry – we’ll get right back to our search for a cure as soon as we can. We are also thinking about how we can limit spread in the clinic and discussing policies right now. Stay tuned!

Source: UMass Medical School