Health & Fitness

How the Alopecia Justice League Is Working to Change the World

Alison Lee.Share on Pinterest
Enhancing healthcare for individuals residing with Alopecia? This appears like a job for Alison Lee (pictured above) and the Alopecia Justice League. Picture Supplied by Alison Lee

As a younger baby, Alison Lee woke as much as strands of hair on her pillow. A lot hair fell out that she developed bald patches over her head.

On the age of 5, her mother and father took her to a dermatologist. It was then that she and her mother and father heard the phrases “alopecia areata” for the primary time.

“Alopecia is a generic time period 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 individuals within the U.S. have the situation. However Lee says many individuals realized of it for the primary time in the course of the Oscars when comic Chris Rock made feedback about Jada Pinkett Smith, an actress and speak present host who has the situation. Pinkett Smith’s husband, the actor Will Smith, responded by slapping Rock.

It was an unsightly second, however one of many few silver linings was that it referred to as consideration to the illness.

“The second on the Oscars definitely introduced unmatched consideration to alopecia areata,” Lee says. “For the primary time, even my friends have been speaking in regards to the situation.”

For Lee, this consciousness is essential. Although alopecia’s most noticeable symptom is hair loss, it will possibly take a hidden toll. Lee additionally grew up on the receiving finish of feedback and bullying, which affected her socially and emotionally.

“As a result of alopecia may be very noticeable, our day-to-day lives are affected in methods many wouldn’t even take into account,” Lee says. “Whereas I’ve had alopecia areata for a few years, contemplating all of the elements, dangers, and worst-case situations remains to be exhausting.”

For instance, she has to fret about her bandana falling off whereas taking part in aggressive soccer and discovering headwear that may take in sweat and keep on whereas understanding.

“As a result of everybody has hair, it’s difficult to know life with out it,” Lee says. “It’s much more troublesome for people to empathize with the trigger with out the power to narrate.”

However Lee just isn’t alone. One 2018 review instructed that individuals, notably girls, with alopecia can expertise opposed psychosocial results and decreased high quality of life. Researchers referred to as for extra suggestions relating to remedies, camouflage methods, and help teams.

Lee is pushing for these options 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 invoice H.R. 5430 handed, which might mandate insurance coverage protection for wigs underneath Medicare — making them extra accessible to people no matter revenue stage.

“All people with hair loss needs to be empowered to decide on what to put on on their heads with out bearing any monetary burdens,” Lee says. “Wigs are crucial to the psychological well being of many with hair loss. However, high-quality, sturdy wigs can value hundreds of {dollars} and are usually not lined by insurance coverage.”

Consciousness of the situation is essential. And Lee and a pair of specialists mentioned the situation and the way sufferers and others can advocate for options.

Alison Lee playing soccer.Share on Pinterest
“All people with hair loss needs to be empowered to decide on what to put on on their heads with out bearing any monetary burdens,” Alison Lee (heart) says. Picture Supplied by Alison Lee

Dr. Christopher Levert explains that most individuals lose about 100 strands of hair every day. However others lose extra or might cease changing the hair that they misplaced. Levert says there are a number of triggers for hair loss, together with:

  • stress
  • vitamin
  • drugs
  • autoimmune or metabolic points

“At its core, both hair is unable to finish the hair cycle, shifting by the expansion, involution, and relaxation phases, or is destroyed by the physique’s immune system,” says Levert, who works in inside medication for Memorial Hermann Medical Group Katy Primary Care.

Levert says the most typical varieties of hair loss are:

  • alopecia areata: an autoimmune situation that happens when the scalp and remainder of the physique loses hair in patches, which is what Lee has
  • androgenic alopecia: the most typical kind of hair loss attributable to hormonal adjustments within the physique as individuals grow old
  • telogen effluvium: fast hair loss triggered by emotional, psychological, or hormonal stress
  • anagen effluvium: happens when hair stops shifting by the expansion part, usually due to medical therapy like chemotherapy

Behnam says alopecia can lead to scarring, but it surely usually doesn’t.

Analysis

A dermatologist identified Lee with the situation, and Levert says that is typical. Major care physicians also can diagnose it.

“The bodily inspection of the hair is crucial first step as it will possibly assist to slender down the causes primarily based on the place the hair loss has occurred, the well being and look of the underlying scalp, and any new hair progress,” Levert says.

Typically, this step is all of the physician wants, however further testing could also be needed and embody:

  • dietary and vitamin assessments
  • metabolic labs for continual ailments akin to diabetes or thyroid illness and autoimmune circumstances
  • hormonal assessments, particularly round instances of hormonal change, akin to puberty or menopause
  • a biopsy
  • analysis of hair progress utilizing a microscope.

Levert says alopecia is usually identified after frequent and sustained hair loss like Lee skilled. Individuals often don’t are available in after experiencing hair loss for a minimum of two to a few months.

Remedy

Lee used a topical cream, although she says these remedies can generally trigger painful blisters.

Levert says therapy relies on the underlying trigger however might embody:

  • hormonal remedies, together with topical drugs akin to minoxidil and or oral ones akin to finasteride
  • injections into the scalp
  • topical steroid and non-steroidal lotions
  • drugs which might be delivered and have an effect on irritation all through your entire physique (usually used when alopecia is a results of an underlying autoimmune situation)
  • dietary adjustments
  • dietary dietary supplements
  • hair transplants

Alopecia could cause points which might be greater than skin-deep. Lee nonetheless remembers having her wig pulled off throughout third grade.

“Whereas this second was extremely traumatizing, it was a turning level in my alopecia journey,” Lee says. “I started to completely come to phrases with my situation and change into empowered by the truth that I’m completely different.”

Regardless of the epiphany — and the advocacy she’s finished over the past 10 years — Lee nonetheless finds herself wishing she had hair at instances.

“I had, and proceed to have, many moments the place I want I weren’t bald,” Lee says. “As a younger lady, being unable to model my hair, go to hair salons on particular events, and even sit by a lice inspection (imagine it or not) was miserable.”

Levert says these emotions are regular and a part of a typical chorus he hears from sufferers with alopecia, no matter age.

“Hair is a crucial a part of our identities,” Levert says. “Individuals affected by hair loss are at elevated threat for psychiatric problems akin to melancholy, nervousness, and social phobias.”

Levert says individuals experiencing melancholy, nervousness, and social phobias might expertise signs akin to:

  • extreme disappointment
  • irritability
  • lack of enjoyment
  • fixed worrying
  • exercise avoidance
  • lack of enjoyment

Levert says individuals experiencing these signs ought to search help, together with:

  • cognitive behavioral remedy
  • treatment for melancholy or nervousness
  • help teams

Lee says writing about her experiences has helped her cope.

“By means of all various kinds of writing, together with poetry, comedy, and non-fiction, I can weave my private experiences with my ardour for advocacy,” Lee says.

Lee feels that bringing consideration to alopecia will assist individuals really feel much less remoted and create options to raised the lives of individuals with the situation. There are a number of methods to assist, whether or not you might have alopecia or not, together with:

  • advocating for laws akin to H.R. 5430 by contacting representatives
  • becoming a member of help teams
  • researching the situation
  • supporting an individual’s selections on if and tips on how to camouflage the situation
  • educating others on the situation, notably after they make insensitive feedback

Easy methods to advocate for your self when you’ve got alopecia

Lee says that advocacy was intimidating at first, but it surely has been an empowering and therapeutic expertise.

“The alopecia group contains people who’re extremely resilient and provoking. I work together with people each day by Alopecia Justice League’s [social media channels], and their power and eagerness to assist are implausible,” Lee says. “Regardless of the hate current on this planet, the alopecia group makes me really feel empowered by my situation and heard.”

Lee additionally attended a help group run by the NAAF final 12 months, which helped her really feel much less alone and extra motivated to advocate for change. Individuals can discover extra details about these teams on the NAAF’s website.

Advocating for others

Even in case you don’t have alopecia or are simply studying about it, there are methods to help people experiencing the situation. Lee’s mother and father have been two of her largest supporters, and so they began by educating themselves.

“Since my analysis, my mother and father have researched all issues associated to alopecia,” Lee says.

Lee says in addition they let her resolve if or tips on how to camouflage her alopecia.

“My mother and father have at all times supported me in how I current myself, whether or not with a bandana, scarf, or wig,” Lee says.

Standing up for people when somebody makes an insensitive remark in a constructive means can also be essential and may scale back the emotional load.

“Every time somebody made a impolite remark, [my parents] would interject,” Lee says. “Somewhat than matching the stranger’s negativity, my mother and father would use the chance to elucidate the situation. Whereas it is rather tempting to reflect somebody’s negativity, I’ve realized that you could method them calmly to open their eyes.”

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