My daughter started losing all her hair because of alopecia when she was 3. It was very difficult to watch her go through it, but I'm now doing all I can to make sure she grows up with self-confidence.

By Catherine Franssen
September 24, 2019
Courtesy of Catherine Franssen.

During our summer vacation last year, I noticed my then 3-year-old daughter, Gwen, was missing some of her eyebrows. As we swam and played in the pool, I watched her wrench goggles on and off her little face in a rough imitation of her older sister, and I assumed that a summer of doing this must have pulled out some hair. It looked a bit strange, but seemed evidence of fun, so I didn’t worry much.

Fast forward a year to that same vacation pool and I caught Gwen’s slippery, completely hairless body for a brief moment as she gulped a breath before wriggling away again. Her eyes were no longer rimmed with lashes or shielded by eyebrows. She didn't care. She was busy acting as a mermaid unicorn in hot pursuit of an evil giant sea snake. She was also too busy for my motherly worries.

But we soon discovered the reason for her hair loss: Gwen has alopecia, an autoimmune disorder where her immune system attacks her hair cells. In the more common form, alopecia areata, the hair loss is patchy and may come and go. Gwen has alopecia universalis, meaning a total loss of all hair on her body.

The process of hair loss itself was alarmingly rapid. After a few months of losing her eyebrows, Gwen began losing scalp hair in obvious circular patches, leading quickly to her diagnosis. We figured it would stop there, with patchy hair loss that would grow back.

Within two months, however, there were more bald spots than hair, and we began to accept that she’d lose the remainder. We talked to Gwen about it, preparing her for the inevitable. We put the control in her hands. On a warm afternoon in March, she decided she was ready, and we gathered on the back deck as a family to cheer her on as daddy shaved off the remaining hair. None grew back.

Over the next few months, hair from her arms, legs, nostrils, eyelashes all fell out. We forget all the useful functions of hair as we groom and shape it to our ideals. Gwen’s nose hairs were gone, and her upper lip went raw from constant wiping. We needed headbands so sweat wouldn’t drip into her eyes and a headwrap for protecting her head under a bike helmet.  We argued all summer about keeping a hat on her bald scalp, when she preferred just slathering it in sunscreen.

Courtesy of Catherine Franssen.

Within a few months of her diagnosis, Gwen lost every hair on her body. My reactions came in two waves.

The first was the week she was diagnosed. I grieved the loss of hair and I wept for her future teenage self. I worried and fretted and cried. My husband consoled me by reinforcing the important points: She’s otherwise healthy; it’s just hair; there are wigs and makeup and hair replacements when she’s ready. He was right. But it was still scary and strange and worrying to look at my little girl and see her lovely head without her signature pigtails.

The second was the week that I realized there was no cure. It was April, three months into the diagnosis, two weeks into living with a bald child, and the end of a week of specialist appointments. There are medical interventions that we can try. Something might work to regrow hair, but it will almost certainly be temporary. And nothing is without side effects, some serious. I was deeply rattled—and maybe even shell-shocked. I waited until everyone was off at school and fell apart. I decided on an impromptu eight-hour gardening session so I could sweat and weep into the dirt and rant into the wild blue sky and wear myself out completely. And that was it. After that day, I was over it.

The key for me was to let go of the battle for hair. I waved the white flag and said “no” to the drugs that might possibly restore some hair for some time. Everyone makes different choices. Maybe one of the treatments would have worked. Maybe she wouldn’t have had debilitating side effects. I chose to skip that chapter and to double my efforts in fighting the battle for her self-confidence and community.

Gwen is more than her hair, more than her appearance. So very much more. And I will love and celebrate and flaunt all of her. And she will grow up in a world that will see her as hairless, gorgeous, and fantastic. It will shape her personality differently. It will be challenging. As much as we live in this wonderful era of "girl power," women (and all people) are still judged on our appearances first. Everyone says that they embrace differences, and now we get to observe how well they do with it.

I decided to post on social media shortly after Gwen’s diagnosis. It was a way of trying to take a little control in a situation that we had no control over; sharing our vulnerability before any attacks could be launched. Social media posting about Gwen’s alopecia turned out to be a great choice. Everyone had positive energy to share with us, and several people knew someone with alopecia and connected me to them. I was informed about webpages, Facebook pages, organizations, and more. Our family continues to benefit from the connectedness and educational resources shared with us.

Gwen just started kindergarten. Before classes started, we sent letters to her teachers, classmates, and administrators to let them know what to expect. Once again, we were met with kindness and support. The next part of our journey begins.

Catherine Franssen is a professor of psychology and director of neurostudies at Longwood University.

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