ALOPECIA CONFERENCE: A UNIQUE PERSEPCTIVE BY JILLIAN WALKER

Bustling and bursting with herds of people per usual, Atlanta INTL airport was thankfully the last layover before Susan and I would arrive in Indianapolis for the 2010 National Alopecia Areata Foundation (NAAF) Conference. Just before boarding the
final leg of our flight, Susan became aware that a beautiful young bald
girl, (who we would soon learn was named Kayla), was earnestly smiling
at Susan in her beaubeau scarf. They exchanged knowingly bald looks and
soon struck up a conversation. She immediately asked if we were going to
the NAAF Conference. When Susan replied yes she was, and yes she also
had Alopecia. Kayla simply lit up! Her instant friendly manner echoed
her delight at meeting someone heading to the same place as she, with
the same purpose. She jumped out of her seat and recited a story that
quickly had us laughing, a little comedian in the making; what a
personality this child had! Precocious and sly, I would have many more
welcome interactions with Kayla and other children like her.

We arrived on a beautiful day in Indianapolis, thankfully devoid of the standard Florida summer humidity. Immediately upon walking into the Hyatt Regency’s Indianapolis lobby 5 adorable bald children flashed past me in a rush of giggles and pure joy. Not ten seconds later I saw a few hairless ladies having a pleasant conversation as they waited to check into their room. While most people seeing these individuals hair loss would immediately think “cancer”, I knew the real reason behind their hairless heads, and could thus be delighted at the happy communion I was privileged to witness. Working for 4Women.com, a company that designs headscarves for women and girls with medical hair loss, enabled me to understand that these people had Alopecia. Susan, 4Women’s president, had taught me a great deal about the disease, her experience with it, and how it affects those diagnosed. The people I had seen were just a handful of the over 600 attendees of the NAAF 2010 Conference.

For three days I was immersed in this little-known counter culture, full of quite extraordinary personalities, beautiful faces, and rowdy children simply thrilled to be among other people just like them. Because Alopecia is a widely
misunderstood disease that most people have never heard of, the NAAF
conference is an unusually safe place for these individuals. Creating
awareness about this disease is a major theme of these conferences, and
frankly essential, because without it, each Alopecians begin to expect
the same scenario when they are earnestly approached by a stranger.
Often these encounters are heart wrenching, as these strangers have
immediately made the assumption that the bald person they are
approaching is sick or in treatment, and then they launch into a lengthy
tale of their own personal experience with cancer. Over the weekend I
learned that people with Alopecia are used to these stranger’s head
jerks, double takes, or sympathetic stares. It simply goes along with
the territory of being bald.

But what reaction should people have in the face of an unknown condition such as Alopecia? Especially when seeing not just one beautiful baldie, but hundreds of these amazing people?! Putting myself in that position I can only imagine. What would I think walking into the Hyatt, seeing thick crowds of hairless heads, and not having the answer
of Alopecia to apply to the situation? I’m sure my initial assumption
would be along the lines of illness and chemotherapy. However ,
observing the Alopecian’s behavior for even a moment at the NAAF
conference would make me wonder about my assumption. Energy flows
through them quite clearly, they do not move, speak, or behave in a sick
way. One thing to remember, however, is that most stares are perfectly
normal. A congregation of bald people is not an everyday sight!

While I have interacted with Alopecians since I began working for Susan in 2009, , these interactions have been mostly telephone based. Prior to meeting so many people at the conference, I really had no idea how special and vibrant these
people are. Susan gifted me with the opportunity to meet and get to
know several of her friends. These women possessed a quality I don’t
normally see in many people, as they really and truly embraced life with
open arms; they “got it”. All too often the little things in life can
get us down, distract us from what is really important, and block our
ability to be open to all of life’s experiences. Yet despite the
emotional upheaval these women and kids may have endured during and
after their Alopecia diagnosis, they were not ones to focus on the
little things. They were the ones out to have a good time and to enjoy
life! Each conversation during my experience at the conference
confirmed this. When it came time to leave I felt a tinge of sadness,
knowing I was walking away from a collection of uniquely exceptional
people, and feeling so thankful for all of the interactions I had during
my stay. But then again, there is always next year. See you in LA!