Alopecia Areata: Personal Stories and New Treatments

Brandi Jones has dealt with severe hair loss since childhood. She wasn’t facing occasional shedding, but rather significant bald patches, leading her to describe her appearance as looking “like a leopard or cheetah.” Now 54, Jones is a benefits manager in Louisville and was diagnosed with alopecia areata, an autoimmune disorder affecting hair growth, when she was just 18 months old. For over fifty years, this condition has shaped her life.

Throughout much of her life, to cope with this issue, she relied on wigs, extensions, and small hairpieces called “toppers” to conceal her scalp. Even during intimate moments, like going to bed with her fiancé, Jones often waited for the lights to be out so he wouldn’t see her hair loss. “It’s always in the back of your mind,” she reflects, noting how people often say, “It’s just hair,” but that’s not how it feels when looking in the mirror.

Things began to change for her in 2021 when she participated in a clinical trial for a new alopecia drug named Leqselvi. Fast forward four years, and her transformation is striking—her hair now flows in thick, layered waves past her shoulders. “I even treated myself to a Dyson Airwrap this year!” she shared, a hint of pride and excitement in her voice.

Her success with the medication has been remarkable. The FDA approved this new drug in July 2024, joining two others—Litfulo and Olumiant—that have been assisting countless individuals in regrowing their hair. While these treatments, categorized as Janus kinase (JAK) inhibitors, do not cure alopecia areata, they are reshaping the way we approach this condition.

After a year and a half on these medications, around 40% of patients can experience an 80% or more regrowth of hair, according to experts like Dr. Ross Kopelman, a hair restoration surgeon. He emphasizes how truly life-changing this can be for those suffering from significant hair loss.

April Noel, a music teacher from Illinois, knows this all too well. She started taking Litfulo five years ago and has seen around 90% of her hair return. “The first time I felt the breeze flowing through my hair while driving with my windows down, I nearly cried,” she said, encapsulating the emotional toll hair loss had taken on her.

Understanding Alopecia Areata

To better grasp how new treatments work, it’s essential to understand the mechanics of alopecia areata. Essentially, this condition arises when the immune system mistakenly assaults hair follicles, disrupting normal hair growth.

Dr. Brett King, a dermatologist whose research has been pivotal in bringing JAK inhibitors to market, explains that while this immune attack doesn’t destroy hair follicles, it renders them incapable of functioning properly.

The root cause of this condition remains elusive, although genetic influences are recognized. Dr. Amy McMichael highlights that an environmental trigger seems to activate alopecia areata in predisposed individuals, but the exact nature of this trigger is still a mystery.

Hair loss patterns vary widely; some may develop round patches, while others may lose all head hair and have hair remain elsewhere. Fluctuations in hair growth can add frustration for both patients and their doctors as they navigate the unpredictability of the disorder.

One characteristic of alopecia areata, as Deeann Graham, an advocate, explains, is its tendency for remission, underscoring the condition’s unpredictable nature.

The prevalence of alopecia appears to be higher in women, especially in Black, Hispanic, and Asian populations. Additionally, many individuals with alopecia often grapple with other autoimmune disorders, such as thyroid disease and eczema, reflecting a complex network of health challenges.

Confronting the Stigma

For the approximately 700,000 individuals in the U.S. affected by alopecia areata, the emotional and social ramifications of their appearance can be profound. Dr. King compares the mental burden of coping with alopecia to experiencing post-traumatic stress disorder.

Societal stigma can run deep, with people often assuming there’s something “wrong” if someone is missing hair. For example, studies show that people perceive individuals with alopecia who still have eyebrows as “normal”—but once those are gone, judgments change drastically.

Lara Ziobro, diagnosed recently, expressed her feelings on the stigma: “People seem to think you’re not taking care of yourself, that something is wrong.”

Such stigma can stifle confidence and lead to avoidance of social situations like swimming or dating. Riley-Klepac, for instance, kept her diagnosis secret from friends and feared being seen without a wig at home. Graham recalls being teased as a child, with classmates pulling off her wig, and delayed revealing her condition to her now-husband.

As hair often symbolizes self-expression, losing it can feel like losing a part of one’s identity. Ziobro lamented, “I took pride in my hair; it was my trademark.” She now adapts her styling to mask thinning areas, reflecting a change in her self-image.

Insights on JAK Inhibitors

Three JAK inhibitors have recently gained FDA approval for severe alopecia areata: Olumiant, Litfulo, and Leqselvi. These medications work by inhibiting Janus kinase enzymes involved in immune responses, ultimately benefiting hair follicles by suppressing inflammation.

Dr. King notes that about half of the individuals on these medications see noteworthy hair growth, which is quite exceptional in the realm of treatment. However, some patients experience limited or no success. Naomie Schreuder participated in trials but discontinued after a year and a half without results. “I had real hopes, especially seeing others thrive,” she noted.

Generally, those who have had alopecia for a prolonged period may see diminished effectiveness from these treatments, emphasizing the importance of early intervention.

Sandra Kelberlau experiences moderate success but has noticed that infections can trigger increased hair shedding. Amelia Anderson shared a similar struggle when a prescription delay led to hair loss within days.

Currently, only patients with severe alopecia (defined as 50% or more hair loss) can access these JAK inhibitors. Many are often left with traditional treatment options, like corticosteroids, which help alleviate inflammation but don’t provide systemic relief.

Recognizing Complications

While these promising treatments come with potential side effects, the initial adjustment phase can be tough. Patients have reported mild nausea and fatigue, with possible increased vulnerability to infections.

However, there are serious concerns surrounding these medications. The FDA previously imposed a black box warning based on findings from trials using different JAK inhibitors. While not all studies observed the same risks, the results pointed to potential severe heart-related issues, prompting caution. Those with a history of cardiovascular conditions should thoroughly discuss their risk factors with a physician.

It’s also crucial to recognize that not everyone with alopecia may be able to use these medications, and financial constraints can complicate matters. The cost ranges from $20,000 to $30,000 annually, leading to challenges, particularly among medically underserved communities. Nonetheless, pharmaceutical companies have initiated programs to improve accessibility.

Balancing Treatment and Identity

The emergence of new treatments has elicited mixed feelings among those with alopecia areata. For many, the condition has intertwined with their identity—they don’t feel the need to conform to societal expectations through treatment. The strength found in community support cannot be understated. Still, the desire for effective treatment is palpable.

Some individuals, like Graham, fully embrace their bald looks, while others, such as Riley-Klepac, experience a blend of excitement and guilt. She reflects on a life-changing experience at a National Alopecia Areata Foundation conference, noting the liberation she felt without her wig. When she returned to school, she publicly shared her diagnosis, garnering overwhelming support from peers.

“I want to inspire people to embrace their authentic selves, whether or not they have a full head of hair,” Riley-Klepac emphasizes, highlighting the importance of confidence at any stage of life.