A New Frontier to Fight This Hair-Loss Disease
WHY YOU SHOULD CARE
Because this disease affects 2 percent of people globally and might be on the verge of its first effective treatment.
By Ian Graber-Stiehl
- Alopecia areata, an autoimmune disease in which patients lose hair in random patches, impacts 2 percent of people globally, yet there are no FDA-approved treatments. People with the condition are also more prone to depression.
- New cutting-edge research is illuminating the path forward against this disease.
Natalie Mamerow noticed her first bald spot two weeks after receiving 19 stitches. A childhood accident at a pool had left her with a deep cut across her eyebrow. Throughout high school, more spots appeared. By the time she was in college, Mamerow would spend 40 minutes in the morning meticulously pinning and positioning her long, curly hair to conceal the gaps.
Mamerow’s experience is typical for patients with alopecia areata, a condition in which hair loss occurs in random patches. And though the condition usually starts on the head, it can evolve as far as alopecia universalis, or hair loss across the entire head and body. As Mamerow’s condition progressed, her eyebrows disappeared, the hair now replaced by a subtle tattoo of fine lines designed to replicate eyebrows.
Now a legislative liaison for the National Alopecia Areata Foundation and its Washington, D.C., support group leader, Mamerow is a vocal advocate for bringing greater public and medical attention to a condition that’s often overlooked or misunderstood. Alopecia areata is estimated to affect 2 percent of people globally.
It can be confused with the most common form of alopecia, androgenic alopecia or pattern hair loss, says Lynne Napatalung, a dermatologist at Pfizer. Though it affects both women and men, androgenic alopecia is often perceived as a predominantly male issue, and ads for male pattern baldness products are ubiquitous, says Napatalung. Yet, even for androgenic alopecia, says UCI Beckman Laser Institute & Medical Clinic dermatologist Natasha Mesinkovska, most treatments offer limited respite at best, stopping current hair loss rather than regrowing it effectively.
Despite the profound physical and emotional impacts of skin conditions, dermatology has not been seen as a priority within the pharmaceutical industry, Napatalung says. That’s finally changing and bodes well for the future of treating alopecia areata. “It’s exciting that there is currently a lot of research and development going on in the dermatology space,” says Napatalung.
We wouldn’t think twice about trying to treat that condition if it were treating your pancreas as with diabetes, or your joints as with arthritis.
Mike Vincent, chief scientific officer, Pfizer’s Inflammation and Immunology Research Unit
That’s good news for patients who have long faced few options. “People view it as a totally cosmetic issue,” says Mamerow. “For women, in particular, there is this idea that femininity is tied to your hair. When you lose your hair … you are losing a piece of yourself.”
As a result, alopecia areata patients are more prone to depression and generalized anxiety disorder, something Mamerow experienced herself. “I started having panic attacks,” she says. These episodes were compounded by a sense of guilt over whether her stress, diet and habits were somehow making the disease worse, although what she actually is facing is an autoimmune disease with roots in genetics.
“Everyone who gets it” has the same question, says Mesinkovska: What did they do wrong? “I ran. I was a vegan. I’m skinny as hell. I don’t stress more than my neighbors. They smoke,” patients tell her, she says.
Alopecia areata can also strike the young, affecting even preteens, says Mike Vincent, chief scientific officer in the Inflammation and Immunology Research Unit at Pfizer. It can affect their relationships with friends, and kids with the disease are often bullied, he says. An estimated 66 percent of people with alopecia areata are under 30.
The challenge is complicated by misperceptions that hair loss is a cosmetic problem. “We wouldn’t think twice about trying to treat that condition if it were treating your pancreas as with diabetes, or your joints as with arthritis,” says Vincent.
The hair follicle is normally protected by immune privilege, which should give it the ability to tolerate antigens without creating an inflammatory immune response, says Napatalung. But alopecia areata is an autoimmune disease, and in those with the condition, that immune privilege collapses. The immune system targets the area, causing inflammation. There is also evidence, says Vincent, that T-cells — vital components of the immune system — specifically eliminate hair cells in the area.
However, science has yet to fully decode how this process starts, or how the immune system targets the follicle. “We don’t understand the precise antigen, or the thing that the immune cells recognize,” says Vincent. “We know it’s in the bulb of the hair, but we don’t know what it is.”
There are no Food and Drug Administration–approved treatments for alopecia areata, only off-label treatments, such as injected steroids or topical or oral anti-inflammatories or immunosuppressants. The efficacy and safety of these treatments can vary widely.
Mamerow started her treatment with a battery of painful cortisone injections in her scalp every six to eight weeks. Although the injections are effective for some people, they never worked for Mamerow. In college, she moved to an oral steroid, which left her bloated and disappointed. In April 2009, she shaved off her remaining hair. “It felt like a huge weight had lifted off my shoulders,” she says.
Mamerow says she was fortunate because she faced little cruel commentary on her hair loss and was able to afford, out of pocket, natural-looking wigs that most health care coverage only provides for cancer patients.
But that barren landscape of treatment for alopecia areata might be changing.
New alopecia areata treatments that scientists are researching may usher in a future where some sufferers like Mamerow may not have to get eyebrow tattoos, spend hundreds of irrecoverable hours stressing over arranging their hair to hide their bald spots or learn to live beneath a crown of someone’s else hair. It could potentially be their own.
- Ian Graber-Stiehl, OZY Author Contact Ian Graber-Stiehl