Izabella Phillips, a 21-year-old from Colorado Springs, has a unique way of navigating the world. When she steps outside, children often ask her if she’s an astronaut because of the futuristic-looking helmet she wears. While their curiosity is innocent, Izabella wishes people could understand the real reason behind her headgear. The helmet isn’t just a costume or a fashion statement—it’s a lifeline that allows her to enjoy the freedom of being outdoors without suffering from a painful skin condition. For Izabella, the helmet is a vital tool that protects her from the sun, which, for her, is a source of both beauty and danger.
Izabella suffers from a rare skin condition called Polymorphic Light Eruption (PMLE), which makes her extremely sensitive to sunlight. This condition is essentially an allergy to the sun’s UV rays, causing her skin to break out in a painful, itchy rash within minutes of sun exposure. The Cleveland Clinic estimates that PMLE affects up to 15% of people worldwide, though it’s more common in women, individuals with a family history of the condition, and those living in areas with limited sun exposure. While most people with PMLE experience symptoms during warmer, sunnier months, Izabella’s case is rare because her reactions occur year-round, making everyday life a constant challenge. “The rash is extremely itchy. It’s really not fun,” she explained, highlighting the physical and emotional toll the condition has taken on her life.
Growing up, Izabella often felt like she was missing out on normal childhood experiences. Her mother, Teresa Phillips, recalled how the family would have to leave outdoor gatherings early to protect Izabella from the sun. “It was really frustrating because we’d be invited to a party, an outdoor party or something, and we always had to be the first to leave, regardless of the circumstances,” Teresa said. “And I felt bad for her. I felt like we were being cheated at that point.” The limitations imposed by PMLE took a significant toll on Izabella’s social life and mental health, as she often felt like she was on the sidelines while others enjoyed normal activities. Determined to find a solution, Izabella sought out ways to reclaim her freedom and live a more normal life. Through a contact who suffered from a rare genetic disorder called xeroderma pigmentosum, she discovered a unique helmet made in France that could block out harmful UV rays.
The helmet was a significant investment—it cost $1,300 and wasn’t covered by insurance—but Izabella and her family saw it as a potential game-changer. The wait for the helmet was filled with anticipation and frustration, as delivery delays led to tearful moments. However, when it finally arrived, it exceeded Izabella’s expectations. The helmet, which resembles something an astronaut might wear, features a large, clear visor with UV-blocking material, an adjustable head strap, and a cooling fan to keep the wearer comfortable. With the helmet, Izabella can finally enjoy the outdoors without fearing a painful reaction. She pairs it with heavy, UV-blocking clothing like denim, leather, and long gloves to further protect her skin. For the first time in her life, she feels a sense of freedom she never thought possible.
Despite the helmet’s benefits, Izabella admits that it’s not a cure-all. She still faces challenges, including the social stigma of wearing such a unique and eye-catching device. “It definitely makes me a bit sad because when I wear this, it’s like a screen between reality and me,” she said. “It’s like everyone’s on the other side of the window.” The helmet acts as both a shield and a barrier, protecting her from the sun but also making her feel isolated from the world around her. Izabella hopes that by sharing her story, she can raise awareness about PMLE and other conditions that require special accommodations. Her goal is to encourage understanding and kindness, so that people will think twice before making assumptions or judgments about her appearance.
Izabella’s caregiver, Taylor Dunn, has seen firsthand the positive impact the helmet has had on her life. “It’s always better to ask than to assume,” Dunn said. “We’re always open to educating people and explaining what the helmet is for. Just being kind to people can make a big difference.” Dunn and Izabella are now exploring ways to help others with similar conditions, including those who can’t afford the expensive protective gear. They hope to launch a fundraiser or donation drive in the future to make these life-changing tools more accessible. Teresa Phillips, Izabella’s mother, has a message for other parents and patients facing similar challenges: “You’re going to hit dead ends, and people are going to close the door in your face. But all it takes is one person to be compassionate to your cause, and then you could get what you need. So don’t ever stop trying. Don’t ever stop asking. Don’t ever stop talking to people, because it only takes that one person to get things rolling.”
Izabella’s journey is a testament to resilience and the importance of advocating for oneself and others. While her helmet may draw curious glances, it’s a symbol of her determination to live a full and meaningful life despite the challenges she faces. By sharing her story, Izabella hopes to inspire others to embrace kindness and understanding, creating a world where everyone—regardless of their differences—can feel included and valued. For Izabella, the helmet is more than just a piece of equipment; it’s a reminder that even in the face of adversity, there’s always hope for a brighter, more compassionate future.
