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Why I Keep Coming Back

Ann Hedges
Ann Hedges

Why I Keep Coming Back


 Ann S. Hedges, from San Francisco, California, is a longtime NAAF Board member since 1997.

Let me give you a brief background on my history with alopecia areata.

I was first diagnosed when I was nine years old, which was years ago, back in the dark ages when there was just a name for alopecia areata. I grew up in New York City, and I knew I was definitely the only kid with alopecia areata on my block, and I figured I was the only kid with it on the island of Manhattan, in the state of New York, in the United States, in this world, and on this planet! The 1950s were about hiding, and I did a really good job of that. I didn’t want anyone to know what I had; I hoped that everyone thought the perfect hair I was featuring was mine. I didn’t talk about alopecia areata or how I felt about it. Instead I created a world for myself that was my salvation and strength, and that was art.

I eventually became a pretty successful artist and teacher. I toughed out having alopecia areata all by myself and I was pretty proud of that; I thought I had done pretty well without my hair.

I got alopecia universalis when I was in my 30s, and I didn’t want to keep hiding my head in the sand, so to speak. I thought maybe there were some new treatments, because I’d pretty much given up on treatments years back. I thought maybe there was even a cure. I got in touch with Dr. Vera Price, and she was sweet, encouraging, and supportive. She didn’t have a cure, but she did suggest that I check out NAAF and the conference. I thought, “I do not need no stinking NAAF, I am tough, I’ve done this by myself, I am not a joiner, I’m not a group person, I am an artist, I am a solo kind of a person.” But somewhere inside me I was curious and so I attended my first conference.

Bingo!

I mean it was a sea of haired and hairless people—people like me. By this time I knew I was not the only person with alopecia areata on the planet, but I had no idea there were so many of us. I had no idea that, as special as I thought I was, there were all these other special people that had the same worries, the same fears, the highs, the lows, the strengths, the weaknesses, the discouraging moments, the hopeful ones, everything that I have had all my life. I almost never really acknowledged alopecia areata. This was the number one reason, the total reason, for me to come to my first conference and the reason I’ve come back to every conference since then.

Recently someone said, “Hey, you have really come out of the closet on this bald thing.” In my adult life I do not think I was ever in the closet per se, but I think I had my hand on the doorknob. I was seemingly extroverted and outgoing in my regular life, but when it came to my alopecia areata, I was not. During my first NAAF conference, I did a lot of looking and listening, but God forbid I should take my scarf off; that was out of the question.

I think what I really care about in terms of this conference is all of you, whether you have alopecia areata, or you’re a sibling, a parent, or a friend of someone who does. We are all in this together, facing the same disease. When I go back to my normal life, I go back with humility and strength. Those are the two things that I take away from this conference, and I apply them for the rest of the year until I come back here again. Despite being a verbal person, I have had a hard time putting into words what this conference is about. I think it’s about the fact that I am now a joiner, I am a group person. And this group is the most important group that I have ever had in my life. I am really proud to be a part of NAAF.


 

 

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