Meet Mayra, AIP Warrior
“At 38, I was diagnosed with AIP, after a 7-year search for answers, near-death experience, and having rebuilt my body from complete paralysis.”
Over the course of 2018, Mayra went slowly paralyzed. It started with unexplained back pain, nausea, vomiting, migraines and diffused abdominal pain. She was told she needed back surgery.
After L5S1 fusion, her nervous system was compromised causing tremors in her fingers, electrocuting sensation up her arm and shoulders, added to the constant episodes that would put her in bed for hours, days or weeks. Eventually, was paralyzed from upper extremities.
“I can time AHP attacks by my monthly cycle. I experience as many as two flares per month still.”
By Dec 2018, Mayra had gone fully paralyzed, weighting only 72 lbs. She was induced into a coma, had an out-of-body near-death experience and decided to fight for her life.
“I’ve learned that true strength is not measured solely by the body, but by the resilience of the heart and spirit.”
Today, she is not only recovering but also enjoys being a Porphyria Advocate with the UPA. She enjoys connecting with others living with porphyria. Her resilience continues to inspire others as she spreads awareness and support.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
