Meet Ginger, AIP warrior
"When I experienced hallucinations, seizures, insomnia, and excruciating abdominal and nerve pain, I was still told I was ‘fine,’ that I was exaggerating, or that I was simply looking for medication."
-Ginger, AIP patient.
My porphyria journey began when I was just 13 years old. My first attack came just days after my first menstrual cycle and brought more than a month of relentless abdominal pain and nausea. Instead of answers or support, I was met with confusion, disbelief, and accusations that my symptoms were self-inflicted. Those early years set the tone for the two decades that followed, countless attacks, frequent emergency room visits, and medical teams who dismissed my symptoms as imaginary, emotional, or drug-seeking behavior.
Throughout my teenage years, early adulthood, and pregnancies, I pushed through debilitating pain while raising a family and trying to live a normal life. During four pregnancies, some marked by premature delivery, hospitalization, and neurological complications, I continued to be misdiagnosed and misunderstood. When I experienced hallucinations, seizures, insomnia, and excruciating abdominal and nerve pain, I was still told I was “fine,” that I was exaggerating, or that I was simply looking for medication. Despite the chaos and fear, I kept fighting for answers.
“I no longer see porphyria as my enemy, but as something that has built my character, strengthened my faith, and equipped me to support others in ways I once desperately needed myself.”
-Ginger, AIP patient.
My turning point came only after years of suffering. An ER doctor finally took me seriously and referred me to a gastroenterologist willing to fully investigate my symptoms. After nearly a year of testing and persistence, the word “porphyria” finally appeared as a possibility. Urine and genetic testing later confirmed Acute Intermittent Porphyria, not only for me, but also for both of my daughters. Together, we carry a newly identified AIP variant, contributing to expanded research for the entire porphyria community.
Receiving a diagnosis changed everything. For the first time, my pain was believed, understood, and treated appropriately. Under the care of a hematologist experienced in porphyria, I gained access to infusion therapy, pain management, and specialized care tailored to my condition. Today, treatment allows me to reclaim parts of my life that were once taken from me, laughing with my family, playing with my grandchildren, traveling (as long as I make it home for my infusions), and waking up to more good days than bad.
Although I still experience attacks and sometimes require hospitalization, I approach life with a strength and optimism shaped by years of silent suffering. I no longer see porphyria as my enemy, but as something that has built my character, strengthened my faith, and equipped me to support others in ways I once desperately needed myself.
That is why becoming a UPA Ambassador has been one of the greatest honors of my life. I use my journey to reach patients who are still being told “it’s all in your head,” families who feel helpless, and caregivers who are struggling to understand what cannot be seen. My advocacy is rooted in empathy, persistence, and the belief that every patient deserves compassion, validation, and access to knowledgeable medical care.
Ginger and her husband.
Through my TikTok platform, Porphyria Awareness, I openly share my day-to-day reality, treatment days, symptom flares, hospital stays, and the victories in between. I offer encouragement, make education accessible, challenge stigma, and create a safe space where patients can feel seen, heard, and understood. I celebrate every step forward, whether it’s a diagnosis finally found, a doctor who listens, or a day without pain.
“I am a voice for the unheard, a guide for the newly diagnosed, and a reminder that porphyria may take much, but it cannot take hope.”
I am not just surviving AIP, I am answering a calling.
My message is simple:
You are not crazy. You are not alone.
This disease is real, and together, we can fight back, find answers, and reclaim joy.
Ginger’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
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