Savannah Fulkerson, an 11-year-old from California, lives with a rare genetic condition called erythropoietic protoporphyria (EPP), a disorder that makes sunlight feel like burning lava on her skin. Diagnosed after years of misdiagnosis and frustration, Savannah’s journey is a testament to resilience and medical perseverance.
EPP forces Savannah to stay indoors during the day, covered in UV-protective clothing when venturing outside. The pain from even brief sun exposure has altered her childhood, limiting activities like beach trips and sunny pool days. Despite the challenges, Savannah maintains a positive outlook, saying, “It doesn’t define me.”
Her story highlights the importance of proper diagnosis for rare conditions and the potential of emerging treatments. A new drug, afamelanotide, offers hope for EPP patients, but it remains unavailable in the U.S., awaiting FDA approval.
Savannah dreams of a “normal life” by the beach, undeterred by her condition. Her courage and optimism inspire others, proving that even in the face of adversity, the human spirit can shine brightly.