Sixth grader, Lily Knapp, walks the halls of her middle school with a new-found confidence. She loves singing, dancing, and playing the piano, and through her soft smile and vibrant personality no one would see the unexpected and life-altering journey of alopecia that she has faced over the last couple years.
In September of 2022, what started as a small, unassuming bald spot on the top of Lily’s head turned into a medical journey that would forever change the Knapp family. Lily’s mother Karen recalls noticing the spot for the first time and thinking that it might be from Lily’s hair twirling habit. After a few misdiagnosis, Lily’s spot rapidly spread and by mid October so much of her hair had fallen out that Lily made the brave decision to shave it all off.
It was through a painful biopsy taken from the top of her head that confirmed the diagnoses of Alopecia Areata, an autoimmune disease that attacks the hair follicles causing it to fall out in clumps. Karen is still haunted by the biopsy day and the pain her daughter felt through it. “I always tell parents who reach out to me with a new diagnosis not to do the biopsy. It’s just not even worth it, because in the end, she had a chunk of her scalp taken out, and it was just unnecessary,” she adds.
Lily’s parents pursued every possible treatment including topical and oral steroids to enduring over a dozen shots in her scalp. “She was only nine and I remember her shaking. There’s a lot of trauma that Conrad and I have as parents from watching her go through that,” says Karen who has been Lily’s biggest advocate in this process. “We always ask her what she feels comfortable doing and follow her lead in treatment decisions.”
Eventually Lily couldn’t be on the steroids any longer and that’s when she lost her eyebrows and eyelashes. After shaving her head, Lily bravely sent a video to her fourth-grade class explaining her alopecia and that some days she would come to school with a beanie on and some days she might want to wear a wig. Lily wanted to demystify her condition for her classmates, many of whom were seeing her without hair for the first time. Lily left the room to allow her classmates time to process her message and when she returned they surrounded her with hugs.
On Halloween Lily arrived to school dressed as the popular character, Eleven, from Netflix’s Stranger Things, who also has a bald head. The costume gave her confidence in her own skin and she never looked back. “I remember playing tetherball, taking my beanie off and dropping it. It felt so good,” said Lily. As her confidence grew, so did Lily’s resilience. In fifth grade, she encountered the familiar stares and questions, but instead of shrinking from the attention, Lily chose to educate others.
Even as rare as alopecia is, Lily wasn’t the only student at her elementary school with the condition. “I found out about the other two kids when one of the counselors told me, and I was actually crying because I felt so good about not being alone,” said Lily. “Then I was moving into middle school and they were younger than me so I felt like I didn’t have them anymore.”
While Lily waits for new trials to open up for her age range, a recent medication she has started has proven to be successful. “We were praying that she would start growing hair before starting middle school,” said Karen as she glances over at the short brown hair covering her daughter’s head and smiles. Lily chimes in, “I remember at the beginning of fifth grade we wrote a letter to send to our future selves on the last day of school. “I wrote: I hope I have my new room and my hair grown back, and I got both,” she says through her sweet laugh.
Karen continues to advocate fiercely on Lily’s behalf, writing countless letters and appeals to insurers for new medications and constantly building Lily up to love herself inside and out. “My family definitely supports me when I feel like I don’t fit in and they tell me supportive things. My sister is also really sweet, and she gives me hugs, said Lily. “My mom helps me because she is my best friend, and my dad always knows the right things to say in situations, which is really helpful.”
Today, Lily is a voice of advocacy for alopecia, raising awareness with the same determination that carried her through her toughest days. Just a few months ago she participated in her second Walk for Alopecia in San Francisco, an experience that connected her with other kids going through similar challenges. The two mile walk helps to raise money for more research, education, advocacy, and support of the over 7 million people living with alopecia.
The Knapp family plan on attending the walk in San Fransisco annually, and to continue educating people locally on a condition that she may be battling for the rest of her life. Though there have been extremely hard days, they are beginning to be few and far between. With relapse always as an option, Lily continues to show bravery and strength with every passing moment.
When asked about how she hopes to do that, she said, “I have seen all these people with alopecia, and I would just love to support them.” Lily’s compassionate outlook and inner strength is something we can all strive to have in this world.
