Aspiring medical student shares his personal struggle with alopecia

I understand the whole desensitization notion that some doctors must use in order to more effectively practice medicine, but I think there’s a fine line between desensitization and losing a very important part of yourself that makes you a kind, loving human.

A few months ago, I had the pleasure of interviewing Dustin, a co-leader at the alopecia areata (AA) support group in NYC (read my post here about the AA support group). He’s still a college student, but he’s already a student researcher at one of the biggest dermatology/alopecia labs in NYC. He’s an aspiring medical student and future dermatologist, and I’m positive we’ll be hearing more about him in the future.

Hi Dustin! Thanks for doing this interview. Tell us a little about yourself!
I’m a senior at Pace University, majoring in biochemistry.

What was your first experience with alopecia areata (AA) like?
My first experience…was when I was 9 years old. I remember in the 4th grade, I was itching my scalp in class and found it amusing that my hair fell out. However, that quickly turned around since I started waking up with my hair on my pillow.

That can be pretty scary for a kid. How did it impact your childhood?
Besides school, sports, extracurriculars, etc., I felt stress and anxiety from what others’ thought about my appearance. My parents were more worried in the beginning because the doctors were uncertain of my diagnosis. My parents just wanted me to be healthy again. I just wanted to be “normal” again.

What was it like in school?
I’d be lying if I said that school wasn’t at least a little terrifying. I thought, “Well, girls will be scared of me and guys won’t want to be friends with the bald kid.” Unfortunately, my hat covering my scalp was pulled off a few times and I was bullied a bit until I finally gained the respect of my peers by standing up for myself. I think it definitely helped that my friends stood by me. With close family and friends as support, things didn’t seem as bad.

I’ve heard that AA can also serve as a “filter” to shield or ward off any “unfaithful” companions. I mean, a girl who is willing to date someone with AA (or other appearance-altering disease) must be looking for something more than just looks, right?

It’s good you had that support. What about in high school and college? 
Ah man, high school (laughs). The “land of terror” during puberty. The community of my high school was actually pretty supportive. Thankfully, I didn’t suffer that much bullying. It was also relatively easy to make friends — although I’ve also grown to be a decently social dude. College was fine, too. Since Pace is located in Lower Manhattan of New York City, I think the student body may be more exposed to “different” individuals than just some bald guy.

Sounds like maturity comes with age. What about dating?
Well, I definitely think I would’ve had a more interesting dating history in my life if I didn’t have AA. However in a way, I also believe that it’s helped prevent unwanted prospective girlfriends from entering my life. To provide an explanation, I’ve heard that AA can also serve as a “filter” to shield or ward off any “unfaithful” companions. I mean, a girl who is willing to date someone with AA (or other appearance-altering disease) must be looking for something more than just looks, right? Currently, I have a really amazing girlfriend who fits that statement.

My attitude…used to be ignoring/shutting it out completely, ensuring that I almost forgot that I even had the disease. However, I now take extremely passionate measures to educate myself about the disease and similar mechanisms of autoimmunity.

That’s a good way to look at it. Glad you found someone who passed the “filter!” How has your own attitude about AA changed as you’ve gotten older?
My attitude…used to be ignoring/shutting it out completely, ensuring that I almost forgot that I even had the disease. However, I now take extremely passionate measures to educate myself about the disease and similar mechanisms of autoimmunity. Currently, I wish to make strides to discover more knowledge about the autoimmune mechanisms underlying AA and similar diseases. It’s helped me uncover my fervor for scientific research and immunology. I hope that one day, I can help find a cure to AA and other autoimmune diseases so that less people have to experience the pain that my alopecia/autoimmune “brethren” and I have underwent.

That’s amazing! Tell us more about your future career goals. 
My education (a concentration in biochemistry) is based on my interest to study autoimmune diseases. My career goal is to become a research dermatologist that studies autoimmune diseases while treating patients in the clinic.

I hope you get there. We need more guys like you changing the world. How did you get involved with the alopecia areata support group?
Almost two years ago, the National Alopecia Areata Foundation (NAAF) reached out to Brittany and I to become the new co-leaders for the NYC support group. As you can tell, we happily accepted and are honored to be leaders of such an awesome group!

Tell us about some of awesome events you guys hosted.
I think one of our best events was one hosted by our friend, Jenni. She organized this event where a few dozen members of the AA community gathered at Times Square in matching “What is Alopecia?” shirts in order to spread awareness and educate the public about the disease. This occasion was the first time some individuals took off their wigs/hats in public, which is a very big moment for a patient with AA. Another event we had was the Brooklyn Cyclones baseball game that was organized by our support group co-leader, Brittany.

It looked like SUCH a blast! What do you wish more people knew about those living with AA?
My friend and I wish that more people were educated about AA, so that less people would assume that it’s cancer (which can be wrong and offensive to many parties on many levels). We’re actually somewhat brainstorming of ways to educate the mass public about AA, but we’re also still a little preoccupied at the moment. It would result in something great, though.

Do you have advice for people who are just starting to experience alopecia? 
Yes! In my experience, I found two things to be the most effective in helping me cope with my disease diagnosis. The first thing is that close family and friends are everything. They will be the hand of support that you will definitely need to help you get back up when you fall. The second thing is that meeting others with AA makes a big difference in how you feel about AA. With only about 2% of the U.S. population having AA, it can seem like you’re the only one in the world who knows what you’re going through, but you’re not. There are others who share your pain and can help you lift the burden. There’s a peculiar sense of camaraderie shared amongst the AA community. It’s a strong feeling that can help you feel a lot better about yourself and your diagnosis. I think practically every person I’ve met with AA agrees with me on this sentiment.

And what about the doctors treating AA patients? 
I wish some doctors were more compassionate with their patients, like when confronted with a patient with AA. I wish some doctors kept in mind that a patient just lost all of his hair and it may never grow it back. I think patients with autoimmune diseases are presented with a different and difficult situation in the sense that they have an illness that may have no known cause nor effective treatment, let alone a cure. This theoretical patient may even have the autoimmune disease for the rest of their life. Which can be very devastating. All of this information can be hard to hear, no matter what age. I just hope more clinicians understand that and communicate with their patient with that aspect in mind.

I understand the whole desensitization notion that some doctors must use in order to more effectively practice medicine, but I think there’s a fine line between desensitization and losing a very important part of yourself that makes you a kind, loving human. It would be a tremendous improvement if more doctors were sympathetic to their patients, such as an AA patient.

Thank you for your insight. As future doctors, we should be more aware and sensitive to these issues when treating patients with these chronic conditions. Before we go, anything else you’d like to share?
Yep! I want to say thank you to Jenny for inviting me to interview on her medical blog and helping to spread awareness about alopecia areata! Also, thank you to her readers for taking the time to read about AA today!

Thank you Dustin! Good luck with school!