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Athletes bravely fight autoimmune disease: 'Alopecia doesn’t have us, we have alopecia' – USA TODAY

When you are a quarterback or an outside hitter on the volleyball court, more often than not, all eyes are on you. 
That attention you receive is only amplified when you have an appearance altering condition such as alopecia.
For Deja McClendon, a two-time NCAA national champion volleyball player whose skills have taken her across the globe to play professionally, the diagnosis of alopecia areata came when she was 12.
According to the National Alopecia Areata Foundation, about 6.8 million people in the U.S. and 147 million people worldwide have, or will develop, alopecia during their lifetime. World class athletes like NBA’s Charlie Villanueva, NASCAR’s Joey Logano and NFL’s Ryan Shazier are among those who live with the autoimmune disease. 
“Around this time, there was not a lot that we knew about alopecia in general, McClendon told USA TODAY Sports. “They (doctors) told me that it was stress related or it could have to do with genetics, but basically I had a couple of options: topical treatments or injections – all of which are steroids and chemicals and stuff you don’t typically want in your body.”
September is Alopecia Awareness Month and its impact, while not always well known, can be felt across many parts of society, including the sports world.
There are three more well-known forms of alopecia; areata, which is most common and causes small hairless patches on the scalp; totalis, which results in the total hair loss of the scalp and universalis, which is the complete loss of hair on the entire body. While there is no cure for alopecia, there is about a 50% chance that hair will grow back at some point.
“At 12, I was basically hiding this condition,” said McClendon. “I had a lot of curly hair and I was just covering up the bald spots and trying to reduce stress in my life using sports.”
While Alopecia does not typically cause physical pain to the body, emotional and psychological pain can present itself through depression and anxiety. 
Although McClendon used volleyball and other hobbies as a form of stress relief to manage the physical effects of the condition, not talking about her condition publicly ultimately put a strain on her mental health and hiding her bald patches from the world was deeply rooted in shame that she felt.
“I would say you battle this idea of femininity because hair equals health and femininity and being beautiful,” she said. “I had a lot of long curly hair that was considered ‘good hair’ and that was part of my identity. But I was living with this secret: ‘I have bald spots’ which is something you never want to talk about. I held onto that for a really long time and did not tell anyone except close friends and family.”
Moving from topical treatments – which are considered as a less aggressive way to treat alopecia areata – to steroid injections, McClendon had to come to terms with the long term side effects the painful injections would cause, and the impact it could have on her athletic career. 
“Dealing with sports you have to go through various processes to make sure you are still allowed to play while doing these treatments,” said McClendon. “When I started to play NCAA volleyball there was a crossroad and I asked myself, ‘Do I want to go through all of this extra stuff in order to play my sport?'”
That lingering question turned her passion for sports and her use of volleyball as stress relief to a stressor itself, ultimately leading to her decision to shave her head completely after a few years playing overseas and attempting to manage different treatment regulations as she traveled to different countries.
Joshua Dobbs, a member of the Pittsburgh Steelers QB room who was diagnosed with alopecia at age 8, also made the life-changing decision to shave his head while playing football in college at the University of Tennessee.
“What I found throughout my time, is that I had not seen many people that had alopecia,” Dobbs told USA TODAY Sports. “A big figure for me growing up was Ryan Shazier, who played at Ohio State and was in Pittsburg before me, and seeing how confident he was and how successful he was, was definitely a great person to look up to.”
With the lifetime risk of being diagnosed with alopecia at 2.1%, the visibility of people worldwide of alopecia is small.
McClendon and Dobbs have both experienced moments in their career when people with alopecia reach out to them and thank them for their bravery of living confidently without their hair.
“I had a young girl named Riley from Tennessee write a letter to me during my time there saying how much she admired seeing me play football on television with alopecia – and it made her feel more comfortable in her skin,” said Dobbs. “Those are the types of interactions that allowed me to become more vocal about having alopecia and overall become more comfortable in my skin.”
For Dobbs being comfortable in his own skin was an endeavor that that largely took place in college.
“When you play at the quarterback position, it is very spotlighted, ” said Dobbs. “We were very successful in college so I was very spotlighted and was in headlines all of the time. Playing in the SEC the fans are so passionate – and I love that about the SEC – but it can be a double-edged sword.You become subjected to jokes, memes, ignorance. some of them are funny as I look make at it because I am more mature now. That was probably the toughest part in this journey. You are going through such a volatile time and stressful time in your life during college. Taking on a heavy course load in the classroom and trying to be the best athlete I could be –that is already pressure enough and now every time you open up Twitter someone is making a mean-spirited joke just because I can’t grow hair– as if I could control that. As I look back, I learned how to manage that and it strengthen me mentally.”
Dobbs and McClendon both hope that people find opportunities to connect with others that have alopecia, as those moments have been extremely eye-opening for them during their journey and to embrace yourself fully no matter your outward appearance.
“No matter when alopecia hits you, it is tough,” said Dobbs. “We grow up in a society where so much is put into how you look, especially with hair and how it defines you as a man or a woman. We grew up with the idea that we need to do our hair every day because it is just a part of our routine in life, and then it is just taken from you. And not to say we find out identity in it but it is just a part of life. 
“It is a part of our journey. Alopecia doesn’t have us, we have alopecia. It is a part of who we are.”
Contact Analis Bailey at [email protected] or on Twitter @analisbailey.

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