How the Alopecia Justice League Is Working to Change the World

Alison Lee.Share on Pinterest
Improving healthcare for people living with Alopecia? This looks like a job for Alison Lee (pictured above) and the Alopecia Justice League. Image Provided by Alison Lee

As a young child, Alison Lee woke up to strands of hair on her pillow. So much hair fell out that she developed bald patches over her head.

At the age of five, her parents took her to a dermatologist. It was then that she and her parents heard the words “alopecia areata” for the first time.

“Alopecia is a generic term that refers to hair loss,” says Dr. Sean Behnam, a hair transplant surgeon and the co-founder of Happy Head.

The National Alopecia Areata Foundation (NAAF) estimates that 6.8 million people in the U.S. have the condition. But Lee says many people learned of it for the first time during the Oscars when comedian Chris Rock made comments about Jada Pinkett Smith, an actress and talk show host who has the condition. Pinkett Smith’s husband, the actor Will Smith, responded by slapping Rock.

It was an ugly moment, but one of the few silver linings was that it called attention to the disease.

“The moment at the Oscars certainly brought unmatched attention to alopecia areata,” Lee says. “For the first time, even my peers were talking about the condition.”

For Lee, this awareness is important. Though alopecia’s most noticeable symptom is hair loss, it can take a hidden toll. Lee also grew up on the receiving end of comments and bullying, which affected her socially and emotionally.

“Because alopecia is very noticeable, our day-to-day lives are affected in ways many wouldn’t even consider,” Lee says. “While I have had alopecia areata for many years, considering all the factors, risks, and worst-case scenarios is still exhausting.”

For example, she has to worry about her bandana falling off while playing competitive soccer and finding headwear that can absorb sweat and stay on while working out.

“Because everyone has hair, it is challenging to grasp life without it,” Lee says. “It is even more difficult for individuals to empathize with the cause without the ability to relate.”

But Lee is not alone. One 2018 review suggested that people, particularly women, with alopecia can experience adverse psychosocial effects and reduced quality of life. Researchers called for more recommendations regarding treatments, camouflage techniques, and support groups.

Lee is pushing for these solutions by turning her struggles into advocacy. In October 2021, Lee, now 16, co-founded the Alopecia Justice League with Lindsay Sullivan. She hopes to get bill H.R. 5430 passed, which would mandate insurance coverage for wigs under Medicare — making them more accessible to individuals regardless of income level.

“All individuals with hair loss should be empowered to choose what to wear on their heads without bearing any financial burdens,” Lee says. “Wigs are imperative to the mental health of many with hair loss. Nevertheless, high-quality, durable wigs can cost thousands of dollars and are not covered by insurance.”

Awareness of the condition is key. And Lee and a pair of experts discussed the condition and how patients and others can advocate for solutions.

Alison Lee playing soccer.Share on Pinterest
“All individuals with hair loss should be empowered to choose what to wear on their heads without bearing any financial burdens,” Alison Lee (center) says. Image Provided by Alison Lee

Dr. Christopher Levert explains that most people lose about 100 strands of hair each day. But others lose more or may stop replacing the hair that they lost. Levert says there are several triggers for hair loss, including:

  • stress
  • nutrition
  • medications
  • autoimmune or metabolic issues

“At its core, either hair is unable to complete the hair cycle, moving through the growth, involution, and rest phases, or is destroyed by the body’s immune system,” says Levert, who works in internal medicine for Memorial Hermann Medical Group Katy Primary Care.

Levert says the most common types of hair loss are:

  • alopecia areata: an autoimmune condition that occurs when the scalp and rest of the body loses hair in patches, which is what Lee has
  • androgenic alopecia: the most common type of hair loss caused by hormonal changes in the body as people get older
  • telogen effluvium: rapid hair loss triggered by emotional, mental, or hormonal stress
  • anagen effluvium: occurs when hair stops moving through the growth phase, often because of medical treatment like chemotherapy

Behnam says alopecia can result in scarring, but it typically does not.

Diagnosis

A dermatologist diagnosed Lee with the condition, and Levert says this is typical. Primary care physicians can also diagnose it.

“The physical inspection of the hair is the most important first step as it can help to narrow down the causes based on where the hair loss has occurred, the health and appearance of the underlying scalp, and any new hair growth,” Levert says.

Often, this step is all the doctor needs, but additional testing may be necessary and include:

  • nutritional and vitamin tests
  • metabolic labs for chronic diseases such as diabetes or thyroid disease and autoimmune conditions
  • hormonal tests, especially around times of hormonal change, such as puberty or menopause
  • a biopsy
  • evaluation of hair growth using a microscope.

Levert says alopecia is typically diagnosed after frequent and sustained hair loss like Lee experienced. People usually don’t come in after experiencing hair loss for at least two to three months.

Treatment

Lee used a topical cream, though she says these treatments can sometimes cause painful blisters.

Levert says treatment depends on the underlying cause but may include:

  • hormonal treatments, including topical medications such as minoxidil and or oral ones such as finasteride
  • injections into the scalp
  • topical steroid and non-steroidal creams
  • medications that are delivered and affect inflammation throughout the entire body (often used when alopecia is a result of an underlying autoimmune condition)
  • dietary changes
  • nutritional supplements
  • hair transplants

Alopecia can cause issues that are more than skin-deep. Lee still remembers having her wig pulled off during third grade.

“While this moment was incredibly traumatizing, it was a turning point in my alopecia journey,” Lee says. “I began to fully come to terms with my condition and become empowered by the fact that I am different.”

Despite the epiphany — and the advocacy she’s done over the last 10 years — Lee still finds herself wishing she had hair at times.

“I had, and continue to have, many moments where I wish I weren’t bald,” Lee says. “As a young girl, being unable to style my hair, go to hair salons on special occasions, and even sit through a lice inspection (believe it or not) was depressing.”

Levert says these feelings are normal and part of a common refrain he hears from patients with alopecia, regardless of age.

“Hair is an important part of our identities,” Levert says. “People affected by hair loss are at increased risk for psychiatric disorders such as depression, anxiety, and social phobias.”

Levert says people experiencing depression, anxiety, and social phobias may experience symptoms such as:

  • excessive sadness
  • irritability
  • lack of enjoyment
  • constant worrying
  • activity avoidance
  • loss of enjoyment

Levert says people experiencing these symptoms should seek support, including:

  • cognitive behavioral therapy
  • medication for depression or anxiety
  • support groups

Lee says writing about her experiences has helped her cope.

“Through all different types of writing, including poetry, comedy, and non-fiction, I can weave my personal experiences with my passion for advocacy,” Lee says.

Lee feels that bringing attention to alopecia will help people feel less isolated and create solutions to better the lives of people with the condition. There are several ways to help, whether you have alopecia or not, including:

  • advocating for legislation such as H.R. 5430 by contacting representatives
  • joining support groups
  • researching the condition
  • supporting a person’s decisions on if and how to camouflage the condition
  • educating others on the condition, particularly when they make insensitive comments

How to advocate for yourself if you have alopecia

Lee says that advocacy was intimidating at first, but it has been an empowering and healing experience.

“The alopecia community comprises individuals who are incredibly resilient and inspiring. I interact with individuals daily through Alopecia Justice League’s [social media channels], and their strength and eagerness to help are fantastic,” Lee says. “Despite the hate present in the world, the alopecia community makes me feel empowered by my condition and heard.”

Lee also attended a support group run by the NAAF last year, which helped her feel less alone and more motivated to advocate for change. People can find more information about these groups on the NAAF’s website.

Advocating for others

Even if you don’t have alopecia or are just learning about it, there are ways to support individuals experiencing the condition. Lee’s parents have been two of her biggest supporters, and they started by educating themselves.

“Since my diagnosis, my parents have researched all matters related to alopecia,” Lee says.

Lee says they also let her decide if or how to camouflage her alopecia.

“My parents have always supported me in how I present myself, whether with a bandana, scarf, or wig,” Lee says.

Standing up for individuals when someone makes an insensitive comment in a positive way is also critical and can reduce the emotional load.

“Whenever someone made a rude comment, [my parents] would interject,” Lee says. “Rather than matching the stranger’s negativity, my parents would use the opportunity to explain the condition. While it is very tempting to mirror someone’s negativity, I have learned that you must approach them calmly to open their eyes.”

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