Meet Maria Paula, AIP Warrior
By Maria Paula Galvis
Curated by Katrina Parra
"My body began to paralyze itself, I lost my voice, and a few days later I stopped breathing on my own"
-Maria Paula, AIP patient.
On May 26, 2024, Maria Paula woke up with unexplained abdominal pain, nausea, and vomiting. As the pain only grew more intense, she embarked on a desperate search for answers, visiting countless clinics only to be repeatedly misdiagnosed with chronic gastritis. The medications provided no relief, and her agony soon spread to her lower back.
By June 8th, the pain was so unbearable that she was hospitalized. There, her condition rapidly deteriorated as she was overcome by extreme fatigue and weakness. The situation turned critical when her body began to shut down; she was paralyzed, lost her voice, and within days, stopped breathing on her own, requiring urgent intubation and admission to the Intensive Care Unit.
“I had to start therapy morning, noon, and night. And as if that wasn't enough, I had a respiratory crisis.”
-Maria Paula, AIP patient.
It was only after thousands of medical tests—all returning seemingly "perfect" results—that she finally received a diagnosis: Acute Intermittent Porphyria, a hereditary disease. By then, she was completely paralyzed and dependent on a mechanical ventilator. Her body endured immense trauma, including a loss of nearly 20 kilos. After receiving her first life-saving dose of treatment, she was confronted with severe new symptoms: insomnia, terrifying hallucinations, and intense neuropathic pain that burned most fiercely in her feet.
Discharged but still fragile, she committed to intense therapy sessions morning, noon, and night. But her battle was far from over. She suffered a devastating respiratory crisis that nearly took her life, leading to readmission to the ICU. There, she received another critical dose of treatment after her menstrual period triggered a second acute attack.
Maria Paula, smiling after her courageous battle with acute porphyria.
Yet, amidst this profound struggle, a flicker of hope emerged. Thanks to the targeted medication and her own relentless dedication to therapy, her movements slowly began to return. She weaned off the ventilator, began speech therapy to reclaim her voice, and started to eat on her own as she regained movement in her upper limbs.
Finally, on December 6, she left the hospital for good, determined never to return. Her new life began, dedicated to ongoing rehabilitation and careful management to reclaim a semblance of normalcy. Maria Paula’s journey stands as a devastating yet triumphant testament to the brutal reality of acute porphyria and the incredible resilience of the human spirit.
“You are not alone. Porphyria exists and it needs to be made visible.”
Maria Paula’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
