Written by Aida Zamani

I was born with a rare condition that would slowly reveal itself over the years. At first, no one realised how much it would shape my life. As I grew, the symptoms began to appear — my skin became extremely sensitive to light, I needed regular blood extractions, and everyday activities that most children take for granted became challenging for me.

Walking was never easy. Over time, my mobility decreased, and for several years now I have been using a wheelchair. When I was a child, local schools did not accept me because of my condition. This was heartbreaking at first, but my mother refused to let it stop me from learning. With her help and determination, I was educated at home and learned to read and write. Those early years were filled with both love and struggle.

Life with a rare condition is not just about physical symptoms. My skin would frequently blister and scar. Because of the pain and risk of injury, I spent much of my childhood indoors. This meant I had very few friends and missed out on the social life that many other children enjoy. It was isolating and sometimes lonely.

But even in those quiet and painful times, I began to discover something that would become my lifeline: drawing. I would pick up a pencil and draw eyes, eyebrows, and women’s faces. It became a small window into another world, a world where I was free to create and express myself.

As I grew older, my mother recognised how much art meant to me. Despite the difficulties of travel and my health, she took me to art classes. Each class felt like a door opening — a space where I was not defined by my condition but by my creativity. Art gave me confidence, purpose, and a sense of identity that I had been missing.

Life has had many ups and downs for me, and it still does. Living with porphyria continues to bring challenges every day. My skin remains fragile, my routine medical care continues, and I still face limitations that are hard for others to understand. Yet through it all, I have found meaning and light in art. It has become the way I express myself, the way I show the world who I am, and the way I turn pain into beauty.

For much of my life, I felt unseen. My condition kept me out of public spaces, and my experiences were invisible to many. But through my art, I have begun to make my voice heard. Drawing has given me the courage to step forward, to share my story, and to transform hardship into something powerful.

I am still on this journey. The challenges of porphyria have not gone away, but neither has my determination. I continue to fight for a better life and a brighter future. My art is not just a hobby — it is my way of surviving, of thriving, and of turning limitations into light.

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