Living With Alopecia Universalis
October 4, 2011
Senior Matt Conn walks through the crowded hallway wearing his usual pair of faded blue jeans, a white under shirt with a blue flannel button up shirt and a black baseball cap crowning his head. Nothing makes him stand out amongst the other students rushing to class, except for the baseball cap. When he walks into his classes his teachers no longer ask him to take it off. Every day before heading out his front door he slaps the hat on his bald head.
The second day of school, seventh block, ten minutes before the bell rings to dismiss for lunch Conn asked Mrs.Mac-Holmes if he could share a journal with his Theater 3/4 class.That day Conn stood up in front of a class full of students without his hat. Conn told the class why he had no hair and for once since the class began the students were quiet.
“I wasn’t scared or worried, I knew they would understand, they are theater kids,” Conn said.
Khiry Cleveland, a friend and fellow Theater 3/4 student, was in the classroom with Conn when he shared his news.
“It was brave, getting up in front of everyone and he showed that that he was willing to come to terms with [his disease] and tell everyone,” Cleveland said. “He was like ‘I’m Matt Conn and I have a disease that is hard to pronounce.’”
Conn suffers from an auto-immune disease, Alopecia Universalis, the complete and total loss of body hair. About one in every 125,000 men and one in every 250,00 women have either Alopecia Universalis or Alopecia Totalis, loss of hair on entire head, according to hairlosstalk.com.
“Matt has always had the love and support of his family and church to carry him through tough times. And when we have failed, and we have, Matt has the support of the One who died for him,” his mom, Debbie Cotter said.
Conn first noticed his hair falling out when he and his 13-year-old cousin were playing chicken in their apartment complex’s pool when Conn accidentally busted his cousin’s lip with his head when coming up out of the water. When he checked to see if he had injured himself he got hair instead of blood.
“My first reaction was, oh [no], why is my hair falling out?” Conn said.
After telling his mom, she looked up online possibilities were of what was causing Conn’s hair to fall out. She then scheduled an appointment with a doctor, and later she scheduled an appointment with a dermatologist.
“My first reaction to Matt losing his hair was fear; fear of the unknown mainly,” Mrs.Cotter said.
Soon Conn found his blonde hair covering his pillow, layering the floor of his bathroom and coating his clothing. As Conn rubs his hands over his eyes and tugs on his eye lashes, eyebrow hairs and eyelashes fall out, a newly developed habit. On Conn’s left eye his eyelashes are few, and his eyebrow has a large patch without hair.
“Matt has been through a lot in his life. Maybe not as much as some and more than others. He has suffered many set-backs, trials and tribulations, but has triumphed over each one. With each trial, tribulation and set-back Matt grows stronger; these are the things that will make or break a person,” Mrs.Cotter said.
Conn’s problems with hair loss are traced back to the first week of July. The trail of hair loss began at his head, then after he lost all of his hair on his head, Conn lost his mustache and facial hair. Next, his arm hair, underarm hair and leg hair fell out. The trail worked it’s way up again to Conn’s face. It took two weeks to completely eradicate the hair on Conn’s head.
“I believe that I have been more upset than Matt has been. Matt’s attitude has set the stage for our family,” Mrs.Cotter said. “He is comfortable with it, so are we. It is helpful to know that Alopecia is not life-threatening; however, the psychological side can be quite daunting.”
Doctors have not found a cure, however Alopecia Universalis can be treated. Treatment varies depending on the individual. Conn has monthly cortisone shots given by his dermatologist, Dr. David. R. Hensley, and started treatments with Rogaine. Mrs.Cotter, believes that the amount of support received by a person during a tough time will determine their success or failure. Conn’s hair may or may not grow back.
“I’m very determined that this will work, it has to, because it’s not my problem. It’s not my decision, to make myself bald, no it’s not. It’s His. You know, that guy up there, he decides everything that is going to happen,” Conn said.
Conn believes strongly in his religion. He thinks God wanted his hair to fall out to him to make him more prepared and stronger the future.
“Matt has had a huge amount of support from his church family and friends. They know him and know that, while he had beautiful, blonde hair, his hair did not define who he was. His relationship with his Savior and family are what define Matt,” Mrs.Cotter said.
Conn plans to eventually travel, telling others about his life experiences and spreading his belief in his Savior.
“I know everything I’ve gone through is an experience so that I can use it later in life to help other people, by sharing what I’ve been through so other people will know how it feels,” Conn said. “So other people will know how it feels like, to go through life every day.”