Aida's Art: Painting Through Porphyria with Strength and Purpose
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Written by Aida Zamani
Curated by Katrina Parra
Everything in my life changed because of porphyria, but art became the light that helped me keep going. I first discovered my love for drawing when I was a child and picked up a pencil. From that moment, drawing wasn’t just a hobby — it became my closest friend and the companion of my loneliest hours.
There were many times I couldn’t hold a pencil because of wounds on my fingers. I would wait, sometimes impatiently, for the sores to heal just so I could draw again. Those pauses were painful, but each time I returned to my sketchbook, it felt like reclaiming a piece of myself.
“The Jack Sparrow portrait proved something to me: my hands, despite everything, can create incredible detail.”
-Aida, CEP patient.
Two of my favorite works are my portrait of Jason Momoa and my Jack Sparrow piece. The Jason Momoa portrait reminds me of my own strength — an image emerging from darkness, a face that refuses to be erased by hardship. The Jack Sparrow portrait proved something to me: my hands, despite everything, can create incredible detail — from the smallest lines to the largest shapes. That realization meant the world to me.
Painting separates me from the harshness of everyday life and invites me into the inner world of the person I’m portraying. It gives me energy and courage to speak through my art: “I am here.” Through painting I feel useful; it gives me purpose and the will to keep living and fighting for my life.
Aida painting her Jason Momoa portrait.
To anyone living with porphyria or another chronic condition: don’t lose hope. Follow what you love and believe in, even if nobody notices you at first. Believe in yourself. I know how it feels to be underestimated, but we are often stronger than we think.
When people see my work, I hope they feel a spark of courage. If you have ever given up or felt defeated, know that I created these paintings despite my condition. I’m not saying my work is perfect — far from it — but I put my whole heart into every piece. Behind each painting there are many hard moments and challenges. I didn’t give up — please, don’t give up either.
Aida’s portrait of Jason Momoa.
Together we can build a more beautiful world for ourselves. I take portrait commissions to help cover my medical expenses, and I dream of sharing my art with the whole world one day.
For more information on congenital erythropoietic porphyria and managing symptoms, visit Porphyria.org or contact us at info@porphyria.org. We are here to support you in your journey.
Aida is a 26-year-old artist and advocate from Iran, living with Congenital Erythropoietic Porphyria (CEP). From a young age, she has used art as her voice and her sanctuary, transforming the challenges of a life spent in the shadows into powerful, detailed portraits that radiate resilience. Her work is not just a creative outlet, but a testament to her unwavering spirit and a message of hope to others living with chronic illness around the world.
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