'I lost my hair but I gained so much more'

Faculty member researches how to help fellow alopecia sufferers be happier

A health condition of his own led to a research interest for Assistant Professor of Rehabilitation and Human Services Garrett Huck and gave him the desire to help improve the lives of others diagnosed with alopecia areata.

Huck developed alopecia, an autoimmune disorder that leads to hair loss on the head and the body, five years ago. There is no cure for the condition, which affects about 6.8 million people in the United States.

“It started with a few little hairs in my beard. It spread to my scalp and I knew for sure it was alopecia. Then it spread to my arms and legs. The last thing to go for me was my eyebrows, which happened about two years ago,” Huck said.

“As I was going through this, I became very self-conscious. People came up to me and asked if I was OK, even my friends. It can be very stigmatizing for people and I experienced this firsthand. I’m a fairly confident person but it was very frustrating for me,” he said.

Going online to learn more

He turned to the Internet to learn more about the condition and found a number of social media groups that brought together people with alopecia – particularly women.

“Unfortunately, women are more heavily judged on appearance than men are. Women suffering from alopecia often don’t have a voice,” Huck said.

He learned that treatments focus on hair regrowth but are often painful and expensive and not covered by insurance. He also found that research into how to help those with alopecia lead happy lives was lacking.

“For most people, medical treatments aren’t all that effective in the long term. There’s no associated physical disability, but alopecia is very correlated with high psychological turmoil and disorders such as anxiety and depression or otherwise diminished psychological states. In general, people with alopecia tend to live much more frustrating lives than your average person without the condition. That’s why I became interested in how we can best help people live with alopecia despite the presence of their symptoms,” he said.

Beginning research

In collaboration with Chanamaria Bialer and Shaina Shelton, students at Penn State Wilkes-Barre, where Huck also teaches, he began exploring different models of psychology, particularly as related to researcher Martin Seligman’s five pillars of well-being. Their research focuses on how the pillars of well-being can be used to improve the quality of life for people living with alopecia.

The model is called PERMA and stands for Positive Emotion, Engagement, Relationships, Meaning and Accomplishments.

“These are the things we have in our lives that give us a sense of happiness and well-being,” Huck explained. “If we can enhance these things in the lives of people with alopecia, we can improve their lives despite them having alopecia.”

“We can help people build a support network or develop more positive support systems. We can encourage them to get involved in their community and we can encourage people to set goals for themselves to develop a true sense of encouragement and achievement,” he said, describing the applications of his research.

Huck and the students reached out to organizations serving individuals with alopecia and received assistance most notably from a group called Bald Girls Do Lunch, based in New York City. The group collaborated with Huck and the students to begin sharing their research survey around the United States and to locations in Canada, England and Australia.

“The impact their assistance had on our study was unbelievable. Within a month, our number of participants more than tripled,” Huck said.

Sharing the results of their research

Huck and the students have finished data collection for their research and will soon submit the first part of their study to an academic journal for publication.

“Right now we’re in the process of analyzing our data. From what I’ve seen, the results are going to be very meaningful and suggest how the PERMA framework does predict quality of life for people living with alopecia,” Huck said. He expects multiple publications from their research given the amount of data they collected. They will present their research at the fall conference of the National Council on Rehabilitation Education in Washington, D.C., in late October. Huck next hopes to study children living with alopecia and speak with their parents to develop parenting strategies for children with the condition.

He will present on the project on Thursday, Oct. 18, at 12:20 p.m. in Room 115 of the Evelyn Graham Academic Building as part of Disability Awareness Day. The Rehabilitation and Human Services department at Penn State Hazleton hosts events each year to raise awareness of disabilities and the people living with them.

“I lost my hair but I gained so much more. Now I’m a member of this community. I see this as such a positive gain in my life to be part of this community and to be able to help all these other people,” Huck said.