Meet Stacy, AIP warrior
"I mostly kept it to myself, thinking I was crazy. I didn't want to be looked at as a hypochondriac or looking for attention."
-Stacy, AIP patient.
The first time I remember having an attack was in 2011. That was when it started. I was 43. In 2012, after months of going through tests, even a HIDDA scan, a gastroenterologist took out my gallbladder. After 2 weeks, the pain was back. It wasn't consistent, but would reappear several times in the next 10 years. I mostly kept it to myself, thinking I was crazy. I didn't want to be looked at as a hypochondriac or looking for attention. I've had mental issues my entire life, but after the attacks started, it got worse. I just didn't want to live anymore- hurting and going crazy. I had no one to talk to, anyone to understand that what I was feeling was real and painful.
“I was in and out of emergency departments for a few years, being diagnosed with things like IBS and stomach flu over and over.”
-Stacy, AIP patient.
The mental health issues came to head in 2019, I attempted suicide and spent two weeks in a mental hospital. I remember a close family member telling me, "again? You need to get your sh*t together and stop this." I will NEVER forget that. I did get better mentally, but the pain came back worse than ever in 2022. I was in and out of emergency departments for a few years, being diagnosed with things like IBS and stomach flu over and over. In 2024, I gave up and thought no one will ever help me. The vomiting, diarrhea and pain got so bad, I cried every day begging God for help.
Stacy at the hospital with Porphy (UPA’s mascot).
I finally said okay, I'm going to try one more time. God sent me to a random gastroenterologist that knew what my symptoms were, from working at UTMB under Dr. Karl Anderson. I call him Father Porphyria. He sent me to a hematologist that specialized in porphyria and the specialist ordered genetic testing. It came back positive for Acute Intermittent Porphyria. I have since been hospitalized more times in a year than my entire life, but it's helping me stay alive and out of so much pain. Without D10 and Hemin infusions, I would still be in excruciating pain.
I thank God every day for helping find the answer. Though there is no cure, I can now get relief, even if a little, from infusions. I also thank God for all of the members and founders of United Porphyrias Association for helping learn and understand what is happening to me.
I can now live instead of surviving with treatments.
Stacy’s inspiring story.
Stacy’s story reminds us how deeply physical illness and mental health can intersect. If you or someone you know is struggling with suicidal thoughts or emotional distress, please know that you are not alone, and help is available.
Suicide & Crisis Lifeline (U.S.)
Call or text 988, or chat via 988lifeline.org
Crisis Text Line
Text TALK to 741741
The Trevor Project (support for LGBTQ youth)
Text START to 678-678
Call 866-488-7368
Reaching out for support is a sign of strength. There are people ready to listen.
Want to share your story? Contact us at katri@porphyria.org
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