A Television Reporter Conquers Her Shame and Anger Over the Disease That Caused Her Baldness

updated 09/03/1984 AT 01:00 AM EDT

originally published 09/03/1984 AT 01:00 AM EDT

Like most victims of alopecia areata, Ashely Siegel had never heard of the disease until she developed it herself. A malfunction of the immune system, it results in the body's attacking its own hair follicles as if they were foreign substances. Although it translates literally as "bald spot," alopecia areata in its most acute form can affect all the hair on the body including the scalp, eyebrows, eyelashes, and even pubic hair. No matter how widespread the hair loss, however, the follicles remain alive beneath the skin surface; allowing for the possibility of regrowth. But researchers have so far been unable to find the "switch" to turn the process back on.

Alopecia is not a physically disabling disorder, but as Siegel found out, it can be emotionally devastating. Born in Davenport, Iowa, Siegel is one of three children; her father is a jeweler and her mother an advertising consultant. Ashely was 17 years old when her hair began falling out. Within four days, all the hair on her head was gone. Angry and ashamed, she struggled for 10 years to keep her condition a secret, turning to drugs and alcohol as a buffer against reality.

With the help of a psychotherapist and dermatologists who had treated alopecia patients, Siegel finally learned to accept her condition. She also founded the National Alopecia Areata Foundation (P.O. Box 5027, Mill Valley, Calif. 94941) to help others with the disorder. Siegel, 32, lives in Mill Valley, Calif. where she talked with reporter Liberty Godshall about how she learned that bald could be beautiful.

I entered the University of Colorado as a freshman in 1970. One morning 10 days after I arrived, I awoke with a burning sensation on my scalp. On my pillow lay huge clumps of hair. I went into the shower and felt more hair come out. It slid down my shoulders and filled the drain. I was frightened. I knew this was not normal hair loss, but I was sure it wouldn't get any worse.

The next morning, as a test, I yanked a brush through my hair and all the hair on the side of my head came out. I thought I was hallucinating. I looked through the telephone directory for the dermatologist whose name was in the boldest print and hitchhiked to his office wearing a scarf over my head.

I'll never forget the look of dismay on the doctor's face as he examined me. Afterward he told me I was going to lose all my hair. He said I had alopecia areata and that there was no cure. His advice was to buy a wig and get on with my life as best I could. I had been waiting for him to prescribe some sort of medicine to make it stop. I left in a daze.

My first thought was that no one could know about this. Two weeks before, dreaming about school and new friends, I had felt my life was just beginning. Now I was scared people would pity me. I purchased my first wig that day. I put every ounce of strength I had into keeping my horrible secret. It's scary enough being a young girl thinking about sex for the first time without having to worry about a boy discovering you don't have any hair. I was sure no one would love me if they knew I was bald.

I couldn't bear to see myself without my wig. I slept with it on. I took showers at 2 o'clock in the morning so no one else would see me. I lived in terror of a strong wind. I actually went skiing with a boy once. I fell over a mogul and my wig flew off. My date speared it with his ski pole and asked me, "Did you lose something?" He thought it was amusing. I was devastated.

When I finally told my parents a few weeks after I was diagnosed, they asked me if I wanted to come home or go to another doctor or if I needed money. But we never got around to discussing how I was doing emotionally. I couldn't seem to find a way to vent my feelings. I was so afraid of the amount of anger I felt, I thought I would go crazy if I started to express it.

This was the '70s and everyone around me, it seemed, was experimenting with drugs. My drug of choice became Percodan, a painkiller I got from a classmate. It left me numb but still able to function. But the pain I stifled during the day tormented me at night. I was haunted by voices that told me over and over that I was going to be alone the rest of my life. I began drinking to squelch the voices. I wanted to crawl out of my body and be anyone except who I had become.

In my junior year I met Kam Fawcett, a student in the psychology class in which I was a teaching assistant. We began dating and eventually I felt close enough to tell him about my condition and even take off my wig in front of him. He totally supported me. After graduation we moved to Hawaii together, but even his love wasn't strong enough to overcome my lack of self-confidence. I was drinking and taking drugs every day. We moved to San Francisco where I worked at a string of jobs in the music business and advertising. I was known as a very offbeat, wild sort of person who would try anything. If I couldn't be pretty, then I could be unique.

Kam and I had begun to grow apart and ended our relationship in 1977. My drinking reached nightmare proportions at this time. Often I'd black out. One day I was sitting in a cafe in Sausalito and the waiter asked me if I really was going to have a glass of wine at 10 in the morning. He knew. He told me he was an alcoholic, too. After that I realized I couldn't continue the charade. I no longer had the strength. I contacted a local therapist, David Jacobsen, who specialized in drug and alcohol problems. I told him about the hair loss and for the first time I realized that in order to avoid dealing with my condition, I had created an even bigger problem—alcoholism. That night he took me to a meeting of other young people with drug and alcohol problems and I've never had another drink since.

Dr. Jacobsen also advised me to find other people with alopecia areata. I realized he was right: I desperately needed to talk to a fellow sufferer. The next morning I had A.M. San Francisco on the television and impulsively I picked up the phone and called the station. I was so impassioned that I got through to the producer. I told her that I knew there must be others out there like myself. I told her I wanted to come on the show.

The next day I told my story live in front of 250,000 viewers. Appearing with me was a dermatologist from the University of California Medical Center in San Francisco who knew a great deal about alopecia. My story just poured out of me, all the fear and anger and pain I had never been able to express. The hostess asked anyone with the condition who was listening to call, and within minutes the station received close to 50 calls. I couldn't believe it. I had lived alone with this for 10 years. When the show ended, the producer threw her arms around me and the entire crew applauded. Six months later the folks at A.M. San Francisco created an on-camera job for me. I became the "Good Ideas Lady." I give consumer tips to Bay Area shoppers. I never dreamed I could be on TV.

After that first appearance Dr. Vera Price, a clinical professor of dermatology, wrote me and suggested that I speak with some of her patients who had alopecia. Over the weeks the size of the group mushroomed, and Dr. Price and I got together with an attorney and formed the National Alopecia Areata Foundation. I did research and learned that some two million Americans have or have had alopecia areata, the vast majority of them in a mild form that results in temporary bald spots. I started writing a newsletter out of my home devoted mostly to practical issues like where to buy wigs, how to have them cut, how to apply makeup. I passed it out to 5,000 dermatologists at a convention in San Francisco, and they passed the newsletter on to their patients. Today we have 5,000 subscribers, and through membership fees and donations, we're offering research grants in the hope of finding a cure.

Now I fly all over the country speaking to support groups and appearing on talk shows. Retelling my story is part of my therapy. I've learned a lot along the way—for example, that people's love for you isn't based on your hair. My first instinct was always to hide my condition but that doesn't work. It's a risk to tell others, but it gets easier once you take it. Sometimes now I even go jogging without my wig. People cheer and give me the thumbs-up sign. They must think I have cancer and that I'm dying. It's funny. I feel like I've just begun to live.

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