Finding Her Voice: Ela’s Story of Growing Up with PC

At first glance, Ela Kislal looks like a typical 17-year-old high school senior. She loves plants and considers herself a horticulturist. She paints, writes, plays the flute (by her own admission, imperfectly), and is proud to be the child of immigrants. She’s smart, hardworking, and busy planning her future.

She is also the first person in her family diagnosed with pachyonychia congenita (PC).

Ela was born with a tooth, developed thickened nails and plantar calluses that make walking difficult, and experiences  a sharp, persistent ear pain that has shaped much of her childhood. Ear pain can be a feature of PC that is not always talked about. For years, Ela was told that the ear pain might disappear by the time she turned thirteen. Each birthday came with hope — and disappointment. Now 17, she continues to manage a variety of symptoms that most people around her cannot see.

“I didn’t know what life felt like without the pain,” she says. “It felt less like the main part of my life and more like a disadvantage I was reminded of every now and again.”

Growing Up Different — and Learning to Cope

As a teenager, one of the hardest parts of PC has been navigating how others react. Ela has a coping motion for her ear pain that can look unusual to people who don’t understand it. She has heard hurtful comments about her nails and appearance, sometimes from people she least expected.

“I wish people my age asked questions and showed curiosity before judging,” she says.

PC shows up in subtle but constant ways during a typical school day. Ela splits her time between high school and classes at a local college. Walking across campus — something most students never think twice about — can trigger significant foot pain from the thick calluses on her soles. Long distances, standing for extended periods, or the wrong pair of shoes can turn an ordinary day into a physically draining one.

In middle school, the emotional toll was heavy. She remembers crying in the bathroom and carrying a constant sense of anxiety. Therapy helped — not because she talked about PC, but because it gave her a space to feel like a normal kid. Over time, coping has become easier. In elementary school she didn’t yet have the tools to manage her feelings. Middle school brought anger and frustration. High school became a period of recovery and self-understanding. Today, she’s discovered something simple but powerful: talking openly about her condition helps.

“It sounds so simple,” she says. “But it really was just that easy for me.”

More Than a Diagnosis

Growing up with PC has taught Ela something essential about identity.

“I learned that I am everything else before I am a person with PC,” she explains. She describes herself as creative, hardworking, environmentally minded, a painter, a music lover, a history nerd, a traveler, a teacher, and a good friend. PC is part of her life, but it does not define her.

That realization became clear when a close friend admitted she had no idea Ela lived with a rare condition. Ela had assumed everyone saw PC first. Instead, she learned that people saw her — her personality, talents, and character — before her diagnosis.

Looking Ahead to College

This fall, Ela will begin an exciting new chapter at the University of Maryland, College Park, where she has been accepted into the honors college and awarded a merit scholarship. She plans to study landscape architecture, combining her love of plants and design.

Her biggest concern is the size of the campus – and how her feet will manage the distance. At 1,300 acres, University of Maryland, College Park ranks among the largest campuses in the country.it ranks among the largest in the country. Ela has already reached out to disability accommodation services and is exploring transportation options. Ela knows from experience that planning makes a difference — whether that means scheduling classes strategically or building in time to rest her feet between commitments. Even with these uncertainties, she is energized by the opportunities ahead and the welcoming support she has received from faculty.

Reconnecting with Community

Ela (and her mom) first connected with PC Project shortly after her diagnosis as a young child. For many years Ela kept her distance, feeling embarrassed and unsure of the value of sharing her experience. Recently, that perspective shifted.

“I realized how much PC has affected my life, directly and indirectly,” she says. “It gives us an outlet to connect and educate each other.”

While she doesn’t claim to have everything figured out, Ela feels compelled to speak up — especially for younger people who may feel isolated.

“I felt so alone growing up,” she says. “I’m doing this to connect with others and make them feel a little less isolated.”

A Message to Other Teens

For other kids and teenagers living with PC, Ela offers reassurance:

“Everyone has their own journey through this. It’s not something to be ashamed of. If you know your limits, you can do everything most people can — and if you can’t, that’s okay. There are a million other hobbies and passions to explore. Don’t get stuck in the endless cycle of ‘what if I didn’t have this condition.’ That’s out of your control. It’s up to you whether you want it to control your life.”

As Ela prepares for college and the future beyond, she carries both the challenges and strengths that PC has shaped within her. Her story is one of resilience, honesty, and growing self-confidence — and a reminder that young voices in the PC community matter deeply.