Organizations offer support for alopecia patients

July 8, 2016

Key resources for patients, families and healthcare providers who deal with alopecia areata include the National Alopecia Areata Foundation, the Children's Alopecia Project and the American Academy of Dermatology.

To address the life-altering impact of alopecia areata (AA), several organizations offer support groups, tips and tools.

The National Alopecia Areata Foundation (NAAF) provides education for patients, families and healthcare providers, plus research funding and an international network of online, telephone and in-person support groups that covers 12 countries.

The Children's Alopecia Project (CAP) aims to build patients' self-esteem, provide support and raise awareness. TV's American Ninja Warrior Kevin Bull says, "For the past year I've been going to camps and events put on by the CAP. It's an outreach and community-building program to get kids in touch with people their own age."

With 45 support groups in 29 states and six nations, "This is the kind of place to let kids know they're not alone. That's a formative time – to be a kid in elementary, middle or high school. There's a lot of bullying that goes on at that age." And anything that sets someone apart can provide a target.

Through the CAP, says Bull, "We encourage kids to think, alopecia is something you have to live with, but it doesn't have to be a negative in your life. There's no reason it should limit you in accomplishing your goals."

Likewise, the NAAF provides an

. It offers tips for parents, students and teachers about how to ensure success in the classroom and on the playground.

The American Academy of Dermatology offers educational materials for patients of all ages.

Dr. GoldbergLynne J. Goldberg, M.D., says she was surprised to learn at a local patient support group that many patients do not want their hair back. She is professor of dermatology, pathology and laboratory medicine at Boston University School of Medicine and director of the Hair Clinic at Boston Medical Center. "Patients would want their hair if it would come back and stay." But with the cyclical nature of AA, she says, many patients cannot bear losing their hair again.

Disclosures: Dr. Goldberg reports no relevant financial interests.