Nicole Castelano

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

The worst part of suffering from this elusive disease was the uncertainty through 12 years of misdiagnosis. Living with excruciating pain, almost dying three times, feeling like I was losing myself and not knowing WHY was unbearable. Gaining knowledge from the resources created by the American Porphyria Foundation empowered me to understand everything about my illness. Just knowing there were others like me in the APF community that had regained their health, gave me hope that no matter how bad it got, one day I could be healthy again. I am back to 100% and just ran a marathon #porphyriastrong - I'm forever grateful to the APF!!!