A patient with vitiligo talks with Heather Woolery-Lloyd, MD, about her personal journey to diagnosis and struggles with the disease.
Heather Woolery-Lloyd, MD: Hello, and thank you for joining this HCPLive® CURE Connections program titled “The Vitiligo Patient Journey.” Vitiligo is a skin disorder that results in the loss of pigmentation in the skin and hair. Vitiligo can significantly impact the quality of life of those affected, often leading to emotional distress and stigma. While traditional treatments such as topical corticosteroids and light therapy can help manage symptoms, recent advancements in treatments like JAK [Janus kinase] inhibitors have shown promising results in improving re-pigmentation outcomes, providing hope for those living with this condition. I am your host, Dr Heather Woolery-Lloyd, director of the Skin of Color Division at the University of Miami, in the Department of Dermatology and Cutaneous Surgery. I am joined today by Ted Lain, MD, chief medical officer of Sanova Dermatology, in Austin, Texas, and Tarasha, who is going to share the details of her journey with vitiligo. Thank you so much for joining us. OK, great. Hello, Tarasha. How are you?
Tarasha: Hello. I am well. How are you doing today?
Heather Woolery-Lloyd, MD:I am great. Thank you so much for joining us and sharing your journey with vitiligo. I wanted to ask you, how and when were you diagnosed with vitiligo?
Tarasha: It actually happened during the start of COVID-19. In June of 2020, something happened with my immune system and my pigment started to go away. It started on my legs, and it just moved up my body from there.
Heather Woolery-Lloyd, MD: When were you referred to a dermatologist, and how did you get your diagnosis?
Tarasha: I was first misdiagnosed as having a skin fungus in Michigan City, Indiana because of how it was presenting when I first went there. I was prescribed a cream to place on my legs and any other parts that were affected. When nothing changed, I took myself to a dermatologist.
Heather Woolery-Lloyd, MD:So, you referred yourself. You were not referred by a premier care doctor, you actually realized that this was something that was more than a fungus.
Tarasha: Yes. I just went myself. It was my dermatologist that I had been using for other concerns. I called to say I didn’t know what is going on. I told them I was told I may have a fungus on my body, but it was not going away with the cream. When I went there, they quickly realized it was vitiligo. It was a shock for me, but I suspected it might be that. With drastic change, everything takes a toll.
Heather Woolery-Lloyd, MD: Had you looked it up before you got to the dermatologist?
Tarasha: I have had family members that have married into my family that have had it, but I didn’t know the extent of it. I was younger when they married in. One day their skin would look one way, and then when I went back years later, their skin would be different. I had heard about vitiligo, but I didn’t know if there was a gene that caused it. I know it is the immune system being compromised. But I don’t know if there is a gene that is somewhere that is triggered that started it. I wondered if I had COVID[-19], and instead of getting the symptoms of COVID-19, my immune system attacked my melanin.
Heather Woolery-Lloyd, MD: When you got your diagnosis, you knew a little bit about vitiligo. What did you think? Were you shocked? Were you scared? What was that first visit, when they told you you had vitiligo?
Tarasha: My first thought was “What can we do?” Remember, this is June 2020, and all my pigment was gone by May of 2021.
Heather Woolery-Lloyd, MD:That was very rapidly progressing.
Tarasha: Yes, it did. It rapidly progressed. I did not have a chance to get used to it. I did not have that. It was drastic. The only thing that kept me going was the fact that I was already in the house, so I did not have to see people. But it drastically changed everything.
Heather Woolery-Lloyd, MD: Were you working from home? It was a very unique time to get a vitiligo diagnosis, because all of us were in our homes. How did it affect other activities like shopping?
Tarasha: It affected me more with both children and adults. It is a point in stereotyping. I had one little girl ask me, “What’s going on? What happened to your skin?” I was able to explain it to her. I prefer that approach from people verses the staring and pointing. The round spots you see, those go away when it is cold outside, so they are not there when it is cold. When it is summertime, they come back. Even the ones on my arms, they will come back when it is warmer outside. The pointing and staring is the part that kind of makes me the saddest. Losing my melanin made me the saddest because I was used to the skin that I was in. So having to get used to the new skin, it’s different. It’s a lot to take on.
Heather Woolery-Lloyd, MD:Do you feel like it impacted your self-esteem? That was such a strong statement. Losing your melanin, losing that skin, having to get used to this skin. How did that impact your self-esteem?
Tarasha: It was hard at first because it was really blotchy. My son graduated in 2021 from high school, and I took pictures with him because I was proud of him. My skin had really started to change during that time. I was proud of him, so I took pictures with him, but my saving grace was also the mask. So you really couldn’t see around my face. That is where it started the most, on my face. My hands and my legs were completely covered, but I could cover those, especially my legs and my feet. But my hands and around my face, I couldn’t cover that. And it took a lot for me to get used to it. It is a lot for me to still get used to it. Even during the summer or the changing weather, it is a lot to still get used to it. Because when it first happened it was cold outside, and everything just went away, and then when it started getting warmer, I noticed the spots coming back and that is the part that I had to get used to all over again. I have to get used this every year. I can deal with one time, but multiple times? It is something.
Heather Woolery-Lloyd, MD:That is a really good point that we don’t really talk about that much. Because you had such a rapidly progressing vitiligo, and then when the sun comes out in the middle of summer, some of your spots re-pigment and so you kind of get used to it but then you go backwards. Do you wear makeup sometimes? Do you ever try to cover that up?
Tarasha: No. At first, I tried to. But there is not going to be a way for me to even anything out. I even went so far as going to the store, and spending all this money on foundations, concealers, bronzers, and all these different things, and it’s just sitting in my bathroom because I don’t really use them. At this point, why would I? One of the craziest things is that when it started, it actually affected my eyebrows and my eye lashes. It gave me this silver streak going in my eyebrows and my eye lashes. That’s my Cruella. That’s what I call it. It’s my Cruella. Because it gives me the off set of grey or the white in my brown eyebrows and lashes and everything. And that one took me some time to get used to as well, honestly. Even that little beady thing took time for me to get used to, and it was actually my beautician that says, “That is unique. Love it. Embrace it.”
Heather Woolery-Lloyd, MD:I love that you embrace it. I love that.
Tarasha: Yeah. I don’t really put on mascara. I don’t darken anything in.
Transcript edited for clarity