Meet Sima, AIP Warrior
“It started with a very severe stomachache — like being kicked and then stabbed several times in my stomach”
-Sima, AIP patient.
I was diagnosed in 2023 with Acute Intermittent Porphyria (AIP).
It started with a very severe stomachache—like being kicked and then stabbed several times in my stomach. Along with the pain came constipation, nerve pain that felt like a burning electric thread running down my body, and shoulders that felt like they were on fire. I had numbness in my stomach, back, and upper legs, and I couldn’t sleep day or night.
The crisis escalated quickly. I was taken to the emergency room because of muscle twitches. At first, doctors were uncertain. They thought it might be Cushing’s syndrome, atypical Guillain-Barré syndrome, encephalitis, or that I needed a psychological evaluation. By the time I was in the hospital, I had developed complete paralysis, dysphagia (trouble swallowing), and terrible hallucinations.
The path to a diagnosis was fraught with fear and uncertainty. But finally putting a name to my suffering—AIP—was the first step toward reclaiming my life.
My recovery truly began with rehabilitation. It changed my life and saved me. I was also incredibly happy to discover the Porphyria community during this time; it gave me so much strength and hope, knowing I wasn’t alone in this fight.
“Porphyria is not just a rare disease; it is life-changing.”
I am learning to cope with it every day and trying to stay as healthy as I can. The love and support of my family and husband are what brought me this far.
To all of you who are suffering: you are not alone. We are in this together, and we can fight it!
Want to share your story? Contact us at katri@porphyria.org
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