Portia Cina was born with ichthyosis confetti, an extremely rare genetic skin condition marked by bright red patches on her body. This condition causes her skin to grow and shed up to 14 times faster than average, leaving her without a full protective layer. As the Foundation for Ichthyosis and Related Skin Types (FIRST) notes, there is no cure for ichthyosis.
Credit: Portia Cina
When strangers see Portia, they often ask, “Are you sunburned?” The 18-year-old smiles and shakes her head. “My skin’s essentially a different protein. The white spots are areas where my regular skin is growing back, and they expand over time,” she explains.
Portia's mother, Jolie, recalls the day she was born: “When she arrived, she looked a little different. Living in the tri-state area allowed us access to top dermatologists.” They quickly connected with specialists from NYU and the Children's Hospital of Philadelphia, and discovered a supportive community through FIRST.
By 11 months old, Portia attended her first FIRST family conference, where she met other families like hers. “The foundation provided incredible support and reassurance,” Jolie says. For Portia, her condition was never a shock; it was simply part of her life. Growing up with her brother, who also has ichthyosis, gave her a sense of normalcy.
However, school was challenging. She faced stares and whispers, especially when her parents informed the school about her condition. Fortunately, by seventh grade, she found a group of friends who accepted her without discussing her skin.
Outside school, Portia explored her creativity through drawing, painting, and music. When she joined TikTok, she initially shared music and typical teen content, but curiosity about her skin persisted. She eventually made a video explaining her condition, which unexpectedly went viral, reaching over 13 million viewers.
The response was overwhelming, with many thanking her for educating them about ichthyosis. “One person said, ‘I have ichthyosis vulgaris,’” Portia notes. “It’s cool to show that people who look different are just like anyone else.”
Jolie is proud of Portia’s impact. “I’m amazed by how people comment on her beauty and talent. Social media can be tough, especially for someone with a visible difference, but the kindness we've experienced has been incredible.”
“If even one little girl sees Portia online and feels less alone, or if someone recognizes her in the grocery store and knows her story, that makes a difference,” she adds. “Even dermatologists have learned from her videos, which is incredible.”
Portia is excited to start her next chapter at the Savannah College of Art and Design this fall, where she will study animation, blending her love for drawing, painting, and storytelling.
While she values raising awareness about ichthyosis, Portia hopes her life won’t be defined solely by her condition.
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| Credit: Portia Cina |
“I believe in advocacy, but I also want to create like everyone my age. I’ve worked hard to make my life feel normal, and I want to share my passions without everything relating back to my skin.”
She smiles. “Honestly, I just want to live a normal life, make friends, have a great college experience, and do what any other 18-year-old would do.”
Her mom, Jolie, reflects proudly, “Portia has grown into an amazing person. While some with visible differences might become introverted, Portia is the opposite. She’s always willing to put herself out there through her music and performances.”
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