Adriana singleton

Type of Porphyria

Congenital Erythropoietic Porphyria (CEP)

My Story

Everything began on October 26, 1998, the day I was born.

From the very first months of my life, it was clear that I was not like other children. My skin reacted painfully to the light, and over time my doctors discovered that I was living with Congenital Erythropoietic Porphyria (CEP) — a rare genetic condition that affects the skin and blood.

Because of CEP, I grew up facing many challenges that most people could never imagine. My skin is extremely sensitive to light, I receive blood transfusions every twelve days, and I now rely on a wheelchair because of severe osteoporosis. I never had the chance to attend school like other children, and in society, my life has been very restricted. Unfortunately, in my country, patients with rare diseases often do not receive enough support — whether it is emotional care, protective creams and ointments, or even access to basic resources that could make life easier.

But despite all of these challenges, I discovered a passion that gave me a reason to keep going: art. Drawing and creating portraits became not only my escape, but also my voice to the world. Through my artwork, I can express strength, hope, and beauty — things that CEP cannot take away from me.

Today, I take commissions for portraits to help cover my medical costs. More importantly, I dream of one day sharing my art with the whole world, to inspire others and to prove that even in the face of rare disease and hardship, creativity and determination can still shine brightly.

This is not just my story of illness — it is my story of resilience, of turning pain into inspiration, and of believing that life, no matter how limited, can still be filled with meaning and hope.