Aida zamani

Type of Porphyria

Congenital Erythropoietic Porphyria (CEP)

I was born with a rare condition that slowly revealed itself over time. A condition that would quietly shape the course of my life. In the beginning, no one could have imagined how deeply it would affect me. As I grew, the symptoms began to appear: my skin became extremely sensitive to sunlight, I required regular blood extractions, and simple, everyday activities that most children enjoy became difficult and sometimes painful.

Walking has always been a challenge, and over the years, my mobility has decreased. For several years now, I have used a wheelchair. When I was a child, local schools would not accept me because of my condition. That was heartbreaking at first, but my mother’s determination never wavered. She became my greatest advocate, ensuring that I received an education at home. With her love and persistence, I learned to read, write, and explore the world through books. Those early years were filled with both struggle and strength, but they built the foundation for who I am today.

Living with a rare disease is more than managing physical symptoms. My skin often blistered and scarred, and because of the constant pain and risk of injury, I spent much of my childhood indoors. This isolation was difficult. I missed out on friendships and the simple joys of childhood.

Yet in those quiet moments, I discovered something that would change my life: art. I began to draw eyes, faces, expressions. Through art, I found a way to escape the limits of my body and express the emotions I couldn’t put into words.

Recognizing how much art meant to me, my mother encouraged me to take classes despite the many obstacles. Each class was like opening a door to freedom, a place where I wasn’t defined by my condition, but by my creativity. Art gave me confidence, purpose, and a voice of my own.

Life with porphyria still brings daily challenges. My skin remains fragile, and my medical treatments continue. There are moments of frustration and fatigue, but art has become my source of strength and light. It is how I express who I am, how I turn pain into beauty and limitation into possibility.

For much of my life, I felt unseen. My condition kept me out of public spaces, hidden from the world. But through my drawings, I have found a way to be seen to share my story and transform hardship into something meaningful.

My journey with porphyria continues, and though the road isn’t easy, my determination remains strong. Art is more than a passion for me; it is my survival, my freedom, and my way of turning darkness into light.