Meet Elizabeth, AIP Warrior
“Living with porphyria is truly like living a double life.”
Living with porphyria is truly like living a double life. I love music, dogs, and the outdoors. Since 2019, I have had to get to know a new part of myself, the other me.
It started with extreme tachycardia that woke me in the night and sent me to the hospital. I saw a half dozen specialists and had a cardiac ablation before finding out 2 years later I had inherited Acute Intermittent Porphyria. By then, my symptoms had snowballed and I experienced episodes of confusion, anxiety/racing thoughts, tachycardia, seizure-like tremors, motor weakness, severe pain and nausea.
“Symptomatic, I am terrified to go on a walk around the neighborhood for fear of triggering an episode and being stranded.”
The other me isn’t fun or adventurous. My symptoms rush in around my menstrual cycle and ovulation. Symptomatic, I am terrified to go on a walk around the neighborhood for fear of triggering an episode and being stranded (which did happen more than once). Non-symptomatic, I embrace the good days which thankfully with treatment, are growing in numbers.
There is no “typical” porphyria patient. You are not alone.
I chose to share my story to increase visibility of this rare disease. There is no “typical” porphyria patient. You are not alone.
Want to share your story? Contact us at info@porphyria.org
Meet others living with porphyria
