Stephanie Milewski with the commissioners. Credit: County of Bucks
Stephanie Milewski was 9 years old when she was diagnosed with alopecia areata, an autoimmune condition that causes hair loss. Now a high school student, she is an active advocate for breaking the stigma associated with the condition.
Milewski was on hand recently when Bucks County Commissioners proclaimed September as Alopecia Awareness Month.
The proclamation recognizes the National Alopecia Areata Foundation’s efforts to support the nearly 7 million Americans affected by alopecia areata.
“Alopecia awareness is needed to end stigma, increase support, and drive research for better treatments and a cure,” Milewski told the commissioners during her presentation.
Alopecia areata affects the scalp and body, causing hair loss that can start with small, round, smooth bald patches. The condition is unpredictable, with hair potentially growing back or falling out again at any time.
Milewski participates in student council, UNICEF, chorus and orchestra at school, and serves as a 4-H member and camp assistant counselor outside of school.
“After 14 years, I know that you may not be prepared for everything that happens in life, but you can learn from life’s challenges and give back to the community,” Milewski said.
As part of the National Alopecia Areata Foundation’s Legislative Mentor Program, Milewski has advocated for wig coverage legislation at state and federal levels. Her advocacy efforts include meeting with representatives to discuss providing wig coverage as durable medical equipment under Medicare and state insurance programs.
“My goal is to advocate and get wig coverage for individuals in Pennsylvania with medical hair loss,” she said.
Milewski’s advocacy work has already achieved success. After meeting with a member of Congressman Brian Fitzpatrick’s office in 2024, the elected official co-sponsored a resolution to amend the Social Security Act to provide wig coverage as durable medical equipment under Medicare.
“Advocacy is important to me because I know how hard it is to have no control over when or if your hair falls out and you are scared of how others may react,” Milewski said. “I do not want individuals with alopecia to feel this way. They should know they are not alone.”
In June 2024, Milewski addressed an audience of 500 people at the National Alopecia Areata Foundation conference in Washington, D.C.
The teen has also organized multiple community events to raise awareness and funds for alopecia research.
In 2024, she participated in the NAF Walk at Washington Crossing Historic Park, where her team “Team Steph” raised $2,000 with 23 members participating.
This year, Milewski is organizing two local walks. A small local NAF walk will take place Sept. 20 at 10 a.m. at Peace Valley Park. A larger community-led NAF Walk will follow on Sept. 27 at 9 a.m. at Neshaminy State Park in Bensalem Township.
Milewski said anyone can make a difference regardless of age or circumstances.
“I have learned that you are never too small to make a difference,” she told the commissioners.
Commissioner Diane Ellis-Marseglia read the proclamation, which recognized that the National Alopecia Areata Foundation has served as the largest nonprofit funder of alopecia areata research, advocacy and community support worldwide for more than 40 years.
