Early in 2006, I considered myself a tough-minded businessman, having recently opened my fourth retail sports memorabilia store in the San Francisco Bay Area. My life changed drastically at the age of thirty eight, when in the span of six weeks, I lost every hair on my body. Eyebrows, eyelashes, a full head of hair - all gone. The beginnings of my experience with Alopecia Universalis sent me into a deep depression. There were many tearful moments. One such moment occurred when I looked into the mirror one day and realized that the reflection that had been looking back at me all these years was becoming shockingly different. It was like losing an old friend, only that old friend was me. Another tearful moment occurred while I was walking my dog on a breezy day, one of my final days with hair. The realization hit me like a ton of bricks that I would never again experience the pleasant sensation of the wind blowing through my hair. There are too many other low moments to list here. Usually, by the time a person reaches the age of thirty eight, life has already thrown most of us a few curve balls. I have experienced setbacks before, but nothing in my life has come close to the emotionally devastating experience of having Alopecia Universalis. Getting Alopecia Areata was like getting a body blow from Mike Tyson. I was knocked down for the count. My lack of hair made me feel unattractive and as though everyone was staring at me. I felt overwhelmed, stressed, and traumatized. Initially, I thought Alopecia was a horrible condition, a big black cloud that one day just invaded my life. Since Alopecia was so hard for me, a grown man in a society where bald men are more and more common, just imagine how difficult it must be for a teenage girl entering high school or a young child.
Determination to defeat the condition with everything modern medicine had to offer was how I faced my first year with AU. As I bounced around from doctor to doctor and treatment to treatment, I came to realize that the sum total of the medical community's knowledge of AA is this: there is no known cause, there is no known cure, and there is no common progression. All my hair could come back tomorrow, or it could never come back. No one knows what will happen or why it happened. I felt like I had come to a dead-end until one day I went to the offices of Dr. Vera Price at the University of California in San Francisco. She was the first doctor that seemed to understand the emotions I was feeling. Dr. Price wasn't able to offer me a cure, but she was able to hand me a NAAF Newsletter, explaining that there was an annual international NAAF conference coming up in Minneapolis. That one NAAF newsletter, handed to me by the Founding Chairman of NAAF, was the first step towards the only “cure” I was able to find for Alopecia Areata. Emotional treatment is the only reliable and effective treatment that currently exists. NAAF provided all the tools for me to get this treatment. In the back of that NAAF newsletter was a list of NAAF support contacts all around the world. I called the number of one of the San Francisco area contacts, Fred Wahl, and for the first time I found out that I was not alone. Talking with other people going through the same experience is vitally important to the recovery process. Group therapy works. I guess it is because no one fully understands what the experience is like unless it has happened to them. My parents, friends, trained psychiatrists, and dermatologists couldn't help me like others with AA could.
When you think about it, how would Alopecians find each other if it weren't for NAAF? I often wondered how it could be that almost 2% of the population gets Alopecia Areata when I couldn't find one walking around anywhere? I felt like I was stranded on a deserted island, all alone, looking in vain for signs of life. Alopecians are good at keeping a low profile. NAAF brings us all together through its various programs. My yearly treks to the annual international NAAF conference is one of the more emotionally uplifting weekends of my year. At the conference, it is very helpful for an older person like me to see the younger people with AA. When I see a young kid dealing with this condition, it gives me perspective. If a child can be OK with it, then I can be OK with it. The group therapy at NAAF organizes Alopecia Areata support group meetings in San Francisco and at Stanford University that have been key elements of my recovery process. I have made a whole new set of life-long friends at these NAAF functions. The Charlie's Angels program enables me to get my sports fix while at the same time seeing young Alopecians in my area. Charlie Villanueva has got to be the nicest star in the N.B.A., and he is an example of a person who has turned the lemons of Alopecia into lemonade. Alopecia is a curse, but it can also build strong character.
My second conference was in Washington D.C. in 2007. NAAF had set up meetings with members of Congress to spread awareness about Alopecia Areata. Being part of a group of 600 people marching onto Capitol Hill was truly inspiring. This group effort was when I first began to think that one day, if NAAF can continue to subsidize research grants and get the word out there, then maybe, just maybe, a cure for Alopecia Areata can be found. After returning from D.C. to my hometown, I was so fired-up that I was able to convince my local Representative, Anna Eshoo, D-Palo Alto, to co-introduce H.R. 5936 which allows Alopecia Areata patients receiving Medicaid to be covered for prosthetic hair pieces. The two words, Alopecia Areata, were now on a Bill introduced into the United States government! It felt so good to help out the cause in this way. NAAF inspired me to help because they gave me hope that things could be made better for those suffering with Alopecia. NAAF is out there fighting the fight for all of us. There are so many of us Alopecians out there in the world. Each one of us has friends and families. What NAAF needs is for each of us to help out a little. If we all chip in, great things can happen.
Today, I accept my Alopecia Universalis, and I am OK with it. I often wonder how I would have reached this point without NAAF. My life has taken a dramatic turn and now, my life's ambition is to help other people who are suffering from Alopecia Areata and some of life's other difficulties. I am going back to graduate school to be a counselor. I am a NAAF support contact person. One day each week I volunteer my time at NAAF's San Rafael offices helping out however I can. I have seen, from the inside, what this small group of nice people are doing every day to try to help out Alopecians around the world.
No matter how happy we say we are in our lives, I think most Alopecians would secretly confess that they would love to have their hair back. If that cure were to come about, it would start with NAAF subsidizing of more research grants. NAAF cannot do this without the generous support of its constituents. Individually, we can't find a cure to Alopecia, but collectively, with the help of NAAF, we at least have a chance.
Prior to my first Christmas with Alopecia, I asked my family to donate to NAAF instead of buying me presents. In my mind it was the best gift they could give me because it showed me that they recognized and cared about what I was going through while at the same time supporting the one organization that could help me. NAAF has given me my life back. Let's face it, the economy is a mess right now and we are all feeling the pinch. NAAF is feeling the pinch too. The holidays are about giving. Giving feels good. Even the smallest of donations to NAAF, in the name of a loved one or friend who has Alopecia, will do so much for that person and the one organization that was formed to help him or her. One of the things all of us going through this experience need to know is that there are people out there that recognize and care about what we are experiencing. NAAF cares about us.