Meet Aida, CEP Warrior
By Aida Zamani
"My skin was extremely sensitive to sunlight and even artificial light, which caused painful blisters and wounds."
-Aida, CEP patient.
My name is Aida, I am 26 years old and I live in Iran. I was born with a rare disease called Congenital Erythropoietic Porphyria (CEP). When I was only two months old, my family realized that I was different from other babies. My mother says that I was very pale, and painful blisters began to appear on my skin. After many tests, the doctors finally diagnosed me with CEP—a disease so rare that most of them had never even heard its name before.
They soon discovered that my extreme paleness was due to severe anemia, and I needed regular blood transfusions starting from just two months of age. My skin was extremely sensitive to sunlight and even artificial light, which caused painful blisters and wounds. Dark urine, changes in the color of my teeth, and later, severe osteoporosis were also part of my condition.
“After several injuries, I was no longer able to walk, and since then I have used a wheelchair.”
-Aida, CEP patient.
My mother remembers when I was learning to walk: I fell down, but I could not stand up again. That was when they realized that my bones had been fragile since birth. After several injuries, I was no longer able to walk, and since then I have used a wheelchair.
Living with porphyria is a constant challenge. From avoiding light to the physical limitations of not being able to walk, from frequent blood transfusions to invisible struggles that others cannot see—it is not easy. I want people to understand that our lives are filled with daily battles and resilience. Just because we don’t always talk about it, it doesn’t mean everything is fine. The absence of tears does not mean the absence of pain. We go through emotions and challenges that many people could never imagine.
Aida with her painting.
But something that has kept me strong is art. Painting has been the light in the dark room I am forced to live in. Through art, I find power and confidence. It helps me express myself, to be seen and heard. I want people to know that Aida exists—with all her challenges, she keeps moving forward, with big dreams and goals, and a desire to be recognized as a hardworking artist.
I want to show that illness does not always mean limitation. Life can still open new paths. My mother and I have lived a life different from many others, but this difference has also brought us strength.
Aida with her paintings.
And if you are reading this and living with porphyria, or facing any other difficult condition, I want you to know: you are not alone.
“Life is hard, but we are strong—and we keep going.”
Aida’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
