Taylor Goggin and her family have found support from the National Alopecia Areata Foundation when facing the obstacles alopecia presents for her, and attend annual conferences every summer.
“It’s like one big family reunion,” her mother, Dannette Goggin, said. “If your family is going through this for the first time, you need to attend a NAAF conference.”
At the conference, which draws in 700 to 1,000 people, families can attend cosmetic training sessions, medical research updates and other meetings throughout the weekend.
“It’s the first time they realize they’re not the only one,” said Gary Sherwood, communications director of the National Alopecia Areata Foundation. “The convention provides a sense of empowerment and fellowship, because kids realize there’s hundreds like them out there.”
Taylor Goggin has been attending the NAAF conferences for 12 years and looks forward to reuniting with some of her best friends each summer. One of them is Sarah Guenzburger, a junior at the University of Connecticut.
Like Goggin, Guenzburger lost all of her hair at a young age, and it never grew back. However, Guenzburger has been open with her alopecia ever since she was diagnosed at the age of 6. She rarely wears a wig.
“I don’t keep it a secret at all,” Guenzburger said. “But, your parents can tell you you’re wonderful; your friends can tell you you’re gorgeous but finding people who actually know what it feels like to be in your shoes definitely makes you feel better.” Guenzburger described it as “a support system you can’t find anywhere else.”
Goggin and Guenzburger also attend to learn about the progress on alopecia research. An FDA-approved treatment or cure has not been found, Sherwood said.
“This is a tough thing for people in our community to live with, because we get asked every day, “what can I do for this?” or “what should I take for this?” Sherwood said. “There’s a lot of hair-growth treatments on the market people want to try. But the thing is those products don’t usually work because they don’t address the autoimmune component which is really causing the hair loss.”