What It's Like to Have Your Immune System Attack Your Hair

How one woman copes with an autoimmune disorder that left bald patches on her head.

On the worst of your bad hair days, you might be tempted to say you're just about ready to shave your head—but maybe don't joke about that. The mane that's giving you so many problems today could start falling out tomorrow, and you'll be wishing you still had the frizzy (or flat, or brittle) mess you were just cursing. I know because it happened to me.

I'd always taken my wavy, shoulder-length hair for granted. But one evening when I was 23, I was mindlessly scratching the back of my head, and I felt skin near my crown where there should not have been so much skin. I headed to my bathroom and pulled out a pocket mirror. I was horrified by what I saw: a completely bare, half-dollar-size patch of pale white scalp, surrounded by my otherwise healthy hair.

Cue instant, all-consuming panic. Between sobs, I called my mother, who could barely understand me because I was so upset. She told me to calm down and to send her a picture and that it probably wasn't as bad as I was making it out to be. This is what I sent her


It still makes me cringe.

The next day, I searched my scalp for more bald spots and noticed the hairline behind my right ear felt a little strange. Sure enough, I discovered another spot, about the same size. More panicking. More bawling.

It would be a week or so before a dermatologist could see me, so I spent the next several days researching hair loss on the Internet. My research revealed I had classic symptoms of alopecia areata, the most common form of random hair loss.

Alopecia areata, an autoimmune condition, occurs when the immune system attacks the hair follicles. According to the National Alopecia Areata Foundation (NAAF), 6.6 million people in the United States will have some form of alopecia areata in their lifetimes. Scientists aren't sure exactly what causes it, but they suspect genes play a role—20 percent of people with alopecia also have a family member with the disease. In those who are genetically predisposed, a virus or a stressful life event may trigger the attack on the hair follicles.

I learned a lot on my own, but honestly, Dr. Google was not comforting. I learned that alopecia areata can progress to alopecia totalis (total loss of hair on the scalp) or alopecia universalis (total loss of all body hair). The NAAF website is loaded with photos of completely bald people.

When my appointment finally rolled around, my dermatologist officially diagnosed me with alopecia areata, and she delivered some good news: I only had the two spots, and the hair was already growing back on its own. (I hadn't been able to see that, as the first millimeters of regrowth come in completely white.) That meant I wouldn't need to try the topical treatments or endure the painful corticosteroid injections other patients use (to varying degrees of success) to stimulate dormant follicles.

I spent the next few months trying to camouflage the bright white spot on the top of my head. First, I ordered some dark brown DermMatch, a product that's basically watercolor paint for your scalp, and applied it after every shower. Then, as the spots grew in, I used hairspray to tamp down the short, springy regrowth. Eventually, the short patches got long enough that I could straighten them into the rest of my hair.

Five years passed, and my hair stayed full and lustrous. Then, last year, a few months before my wedding day, I spotted the tiniest bare patch—about the size of a pencil eraser—right along my part. Fortunately, it stayed tiny, and it grew back on its own.

The worst part about this condition is that it could come back at any time and it could strike any part of (or all of) my scalp. I frequently check my scalp (and have my husband and hairdresser double-check it) for new losses.

One dermatologist I spoke to told me that only 2 percent to 5 percent of people with alopecia areata go on to lose all their hair—but coincidentally, I personally know three people who've had alopecia areata, and two of them have gone totally bald. Another frustrating part of coping with alopecia is that the medical community has not conducted much solid, concrete research on the condition, as it's not life-threatening.

The best part about having alopecia? (Yes, there is a best part.) I no longer take my hair for granted. I delight in drying and styling it, in feeling my ponytail bob as I run, in whipping my mane back and forth on the dance floor. Even on days when I can't tame my frizz, I do not complain. Having hair is pretty great, so love what you've got while you've got it.

For more stories about women living with Invisible Illnesses, check out our series Invisible Illness.

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