Meet Elsie, CEP Warrior
“I’ve accepted that my relationship with the sun is best described as ‘long-distance, and we don’t talk much.’”
Elsie has been living with congenital erythropoietic porphyria (CEP), a rare condition that makes her extremely sensitive to sunlight. Her journey with the disease began in Arizona, where she was first affected by the intense sunlight, which triggered painful outbreaks. Initially, her condition was difficult to diagnose, with doctors struggling to understand her symptoms. After years of misdiagnosis, Elsie was finally referred to a porphyria expert in New York, where she received the correct diagnosis.
Living with CEP has presented Elsie with numerous challenges. The physical toll is obvious—her skin reacts to sunlight in a way that makes it nearly impossible to go outdoors without significant protection. However, the social aspect of the disease has been just as difficult, as it often leaves her feeling isolated and misunderstood. People around her sometimes dismiss her condition, leading to frustration and emotional strain.
Despite the challenges, Elsie has learned to manage her symptoms through careful planning and precautions. She now uses protective measures like long sleeves, gloves, hats, and heavy sunscreen to mitigate the effects of the sun. Outdoor activities require strategic planning, and she has adjusted her lifestyle to avoid direct sunlight whenever possible. Though these precautions limit her daily life, Elsie has found ways to stay engaged and active in other ways, particularly through hobbies that don’t require exposure to sunlight.
Elsie practicing fencing.
Elsie’s story is one of resilience and adaptation. While her relationship with the sun remains strained, she continues to find joy in activities like writing, miniature painting, and fencing. Through her experience, Elsie has discovered that while CEP is a part of her life, it does not define her. She continues to embrace life as best as she can, with a positive attitude and a determination to live fully despite the limitations of her condition.
Want to share your story? Contact us at katri@porphyria.org
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