Meet Geoff, AIP warrior
"My first symptoms were severe abdominal pain and a growing inability to eat"
-Geoff, AIP patient.
I have Acute Intermittent Porphyria (AIP), and to tell my story, we need to go back to the summer of 2023.
I run a landscaping business in my small Alaskan town, and it does pretty well because I enjoy working hard. My first symptoms in 2023 were severe abdominal pain and a growing inability to eat. Still, I was focused on my busy summer season, so I didn’t give my lack of appetite or abdominal pain much attention. I figured it was just me getting older and working hard.
Another month passed, and my abdominal pain became unbearable. My entire body felt crushed under rubble every time I moved a muscle. I went to the doctor, and although all the tests showed my gallbladder was fine, they suggested my issues might improve if it were removed. So I had surgery.
That month, I lost another ten pounds. Even with my gallbladder gone, I was in more pain than ever. Within another week, I lost twenty more pounds. My right leg began to hurt uncontrollably and would shake constantly. At this point, I had to be monitored because I was having convulsions. If I left home, it was only for a few hours at most, and only if someone was with me. I began to worry.
“I was diagnosed with many different conditions, including anorexia, but all my tests continued to come back negative. I felt like I was dying.”
-Geoff, AIP patient.
I had more appointments, scopes up and down and everything in between. I was eventually diagnosed with irritable bowel syndrome and told that this explained my stomach pain and overall symptoms. But things continued to get worse. Each week, I lost another ten pounds. By this point, I had lost seventy-five pounds in a very short period, without dieting or exercise.
I couldn’t eat solid food at all, only popsicles. I went from wearing XL clothing to a size small. I became a “fall risk.” I was too stubborn at the time to use a walker, so I relied on a cane, which I still use today, to stay upright most days or when I travel.
I was diagnosed with many different conditions, including anorexia, but all my tests continued to come back negative. I felt like I was dying. I begged doctors to listen when I told them something inside me was wrong, that something was dying, but no one could tell me what it was.
Eventually, I was told that cancer was the most likely explanation and that I should make peace with that reality. Doctors couldn’t figure out what was wrong, but my condition was so severe that they believed this was the answer. I was frail and weak and frequently needed ambulance rides during unexplained attacks.
During my worst attack, doctors believed I might die. I was medevacked to a hospital in Seattle (UW), where I officially became a “zebra.” They knew something was seriously wrong and told me they believed I had ALS, not cancer, or possibly both.
They told my wife first. When she told me, something inside me broke. I didn’t react outwardly, but I began preparing my family for what I believed was the end. I made a will and prepaid expenses so my wife wouldn’t have to. I truly believed I had very little time left.
I was emotionally shattered. Even something as small as someone saying hello felt like it might break me. I had nothing left.
Geoff being airlifted during a critical porphyria attack.
I went to one final hospital, Swedish, to undergo ALS testing. Sitting in front of the machine that I believed would confirm my death was devastating. I also had an appointment with a neurologist to discuss the severe pain in my right leg. During that visit, she asked about my stomach pain, and then about every other symptom I had experienced.
She ordered urine tests and told me she was testing for something she didn’t think I could possibly have, but wanted to rule out. She said if anything came back abnormal, they would call me right away. If not, I wouldn’t hear from them.
Weeks later, my family and I decided to take one last vacation together. We went to the Big Island of Hawaii. One Saturday morning, the hospital called. A weekend call is never good.
My first thought was that my ALS test had come back positive. I could barely speak on the phone. Emotionally and mentally, I was completely broken.
The first thing she said was, “You don’t have ALS. You will live.”
That brought me back to reality.
Then she told me the bad news: I had tested positive for porphyria, Acute Intermittent Porphyria (AIP). She explained the hemin treatment I would need and immediately placed orders at UW. My hometown hospital wasn’t equipped to treat me, so I have spent the last few years traveling long distances for care.
She explained how my urine had changed color almost immediately and that my levels were dangerously high. Genetic testing at Fred Hutch Cancer Center later confirmed my AIP diagnosis.
“I am extremely grateful to be in a position to help others just as I was helped, I’ll never be able to fully express how it’s saved me.”
I owe so much to this organization and the support I’ve received through the community. I was lost and needed a guiding light during the darkest time of my life. I am forever grateful.
Geoff’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
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