The 31st annual National Alopecia Areata Foundation (NAAF) International Conference was held in July at the Hyatt Regency Capitol Hill, just steps away from our nation’s Capitol in Washington D.C., and Freedom Wigs was well represented by Independent Agents, Debbi Fuller, Donna Schillaci, Kim Karacz, Jody Gorski, Stephanie Rogers, Jaine Franks and myself. The conference drew over 600 attendees and we all enjoyed reconnecting with old friends and making new ones who were just coming to terms with their Alopecia and researching various hair replacement options. (Remember those early days? You’ve come such a long way!) Workshops and lectures are typically quite varied during the 3 session days but one of them drew my particular attention as it was the first time I’ve seen this offering. The speaker was Kristin Gorbatenko-Roth, a psychology professor from the University of Wisconsin-Stout, who spoke of the role of mental health education and care throughout the course of Alopecia Areata. As a trained clinical health psychologist, she came to understand first-hand the psycho-social aspects of living with this auto-immune skin disease after losing all of her hair to Alopecia. Enter the new field of Psychodermatology! It’s about time that our health professionals recognize the total being (mind and body) and address both the physical and mental aspects of what is is like to lose all of one’s hair, long term. Whether than means a full cranial prosthesis to replace what is missing or retooling one’s image to feel comfortable without hair, it is critical to our healing and being able to move on with our lives. Once insurance companies consider the mental health of an Alopecia patient, they would classify a high-quality, full cranial prosthesis as a “medical necessity”. Only then will we finally be getting the coverage we so desperately need and deserve.
Any basketball fan will have heard of former Detroit Piston, current Dallas Maverick’s star, Charlie Villanueva. Charlie developed Alopecia at the age of 13 and is now generously donating his time to help NAAF raise awareness and research funds. He hosts Charlie’s Angels events throughout the country during the regular season by inviting local NAAF support group kids to meet him and enjoy the game. When we saw a 6’11” tall, athletic-looking man enter our exhibit space, surrounded by adoring fans, we knew we had to meet him and ask for a photo. I usually have low expectations at times like these (where there is no formal introduction), but Charlie could not have been any nicer. If only there would have been a way to get our flash to reach all the way up to the ceiling where Charlie’s face was – ha!