Ben Brown, an employee at Vanderbilt, discusses his personal experiences living with vitligo.
Welcome to this edition of the Vanderbilt Health and Wellness Wellcast. I'm Shaina Farfel with Occupational Health. Last week we spoke with Dr. Jeffrey Byers, a dermatologist, about the clinical diagnosis and treatment of vitiligo, a chronic skin condition characterized by loss of pigment over patches of skin. Today, we are speaking with Ben Brown, Network Operations Lead Operator at Vanderbilt University, about his personal experience living with vitiligo. Welcome, Ben. Thanks so much for being with us today.
Ben Brown: Oh, thank you for having me. It's an honor.
Shaina Farfel: Thank you. So, tell us about when and how you were diagnosed with vitiligo.
Ben Brown: About five years ago, I noticed a white dot beneath my nose and I didn't give it much thought because I thought maybe it was some skin healing or something of that nature. So, I didn't give it much thought, and then, maybe a week or two later, I noticed another white dot next to my ... the corner of my mouth. So, then I kind of got a little nervous, like, hey, this is, you know, two odd things on my face. I may need to go, you know, have it checked out. So, I went to my doctor and that's when I heard the word "vitiligo" for the first time in my life. So, the doctor told me that ... he said, "Well, I'm not 100% sure, but I'm 90% sure what I see is called vitiligo. What I am going to do is send you to your dermatologist and let him confirm it, but the good news is - it's not terminal, it's not going to kill you, it's not going to shorten your life, it's not going to hurt, but the bad news is - there is a very big possibility that your skin pigmentation will change and you will have a lot of white patches and possibly lose complete pigmentation and turn white."
Shaina Farfel: And at that point, what were the recommendations moving forward? Did you guys immediately start trying treatments? Was there a waiting period?
Ben Brown: Absolutely. So, he sent me to Dr. Byers, who is one of the dermatologists here at Vanderbilt, and I was first prescribed a steroid skin ointment.But the doctor also sent me to the phototherapy center where we do light band phototherapy. So, for those who don't know, this is equivalent to a tanning bed for people with vitiligo, but they don't use the same, you know, type of bulbs. It's a low-band light therapy that is encouraged to promote skin repigmentation. So, I did that for about a year, and at that point, when I started, my vitiligo had progressed and the therapy slowed it down, but it didn't reverse it. So, after a year of doing this twice a week, it started to get expensive and I had gotten to a point where I said, okay, I'm just going to let this take its course. So, I just decided to stop the treatments.
Shaina Farfel: And is that where you stand right now? Are you currently doing any treatments?
Ben Brown: No, because the overwhelming advice I kept getting from people in the community was just to embrace it, because, you know, while there is a chance that you could repigment, the overwhelming statistics say that you won't. So, the best way to go about it is just to embrace it.
Shaina Farfel: And so, coming off of what you just said, we know that vitiligo can take a real psychological toll on an individual due to its impact on self-esteem and self-image, and so, it sounds like this may have been something that you experienced a little bit, and just for folks out there, how did you cope with this challenge?
Ben Brown: To say that it was devastating is to put it mildly. I compare it to being knocked down in a boxing match. Emotionally, your family don't understand. People in the church,people in the community don't understand it. So, it's hard to reconcile with something that nobody understands. It's a very lonely feeling and it's a very scary feeling, especially for people who are not married. You wonder if you will be loved. . You know, you worry about stuff like that.
Shaina Farfel: Absolutely. As someone who has experienced this, what do you want other people who may be just getting diagnosed with vitiligo to know as they embark on this journey?
Ben Brown: The first thing you'll need to understand is that the world is not over. You may experience a lot of low, low points of your life that you've never experienced, as I did. My advice would be, is to get connected with the vitiligo community. That's what I did and that's what has me here today trying to promote vitiligo awareness for others, because it has turned my life around.
Shaina Farfel: Do you have any advice for, like, family members or friends? How can they support people who may be going through this condition? Are there things they can say or do that you've experienced that have been helpful, or not do that have been hurtful?
Ben Brown: Well, yeah. I mean, family, loved ones, friends ... they will all be in the line of fire, because if you are in the presence of someone with vitiligo, you will always encounter those stares, those comments, those whispers, and you ... if you love that person, I mean, the best thing you can do is just support them emotionally because it's going to be an emotional battle.
Shaina Farfel: You mentioned one of these already, but any organizations or resources that you recommend to others who may be going through this, or again, family or friends that folks should look into?
Ben Brown: Absolutely. There's an organization called VITFriends, Litty Ligo Support Group, and then our organization, which is tvanstrong.org, and that is the Tennessee Vitiligo Awareness Network.
Shaina Farfel: Ben, I really, really appreciate you sharing your story and your honesty with everybody, and I hope it will resonate with our listeners and help anyone out there who may be living with vitiligo themselves or have a family member or friend with the condition. I really appreciate you coming in today.
Ben Brown: Thank you so much for having me, and for those who this podcast will reach, just please reach out. Let's get connected. You're not alone. And this journey is a lot better once you understand that this is just the beginning of a new understanding of your life.