Meet Katrina, AIP Warrior
By Katrina Parra
"I began experiencing inexplicable pain. An abdominal pain that wouldn’t go away, like being constantly stabbed, mercilessly"
-Katrina, AIP patient.
One of those things you never imagine would happen to you… and it happened, and there was no turning back.
I was a normal girl, studying at university, with dreams ahead and a whole life to live. Then, suddenly, in 2012, I began experiencing inexplicable pain. An abdominal pain that wouldn’t go away, like being constantly stabbed, mercilessly (later my doctor told me it was worse than labor pain). And not only that, general discomfort, tachycardia, anxiety, insomnia, nausea, and vomiting... I could go on for hours trying to explain what it felt like at that moment.
That year, I started taking birth control pills. Sounds normal, right? Every woman takes birth control at some point in her life, and it was my turn. What I didn’t know at that time is that those pills almost killed me. I had my first attack, was sent to the hospital, underwent countless tests, and my family was asked if I did drugs or suffered from depression because they couldn’t understand why all the tests came back normal and yet I was suffering.
They decided to perform surgery on me for an intestinal obstruction, which I’m still not sure was necessary, but miraculously I improved. I felt good for five months, until December 24th, 2012, when everything changed. It started with tachycardia and muscle weakness. The next day, I was in despair, my abdomen hurt again, I was vomiting, and I couldn’t stop bathing in boiling water—it was the only thing that calmed me, even if just for a few minutes.
My desperate mother took me to the hospital, and the odyssey began. Tests every day, all the time. I couldn’t sleep—do you know what it’s like not being able to sleep? You go crazy. And with that madness, they isolated me, and I was moved to intensive care because I went into septic shock and was in critical condition. I’ll never forget when the doctor told my mother, “All the family should be here, at this point, anything can happen.”
A week later, they moved me to a room, and we continued searching for a reason, a "why." There was no explanation, days passed, the pain continued, and I kept getting worse. The uncertainty and frustration were so much that, in a moment of desperation (which is understandable), the doctor told my mom, “This is no longer medical, this is psychiatric. We believe your daughter needs psychological help.” Who here has been told that? Raise your hand. I’m sure many of you have experienced it.
Katrina, lying paralyzed in her bed.
To everyone’s surprise, just 2 or 3 days later, the paralysis began. And this wasn’t psychiatric; this was something very serious. In a matter of days, I became completely paralyzed, from head to toe. I could only move this (moving my head). It’s incredible, the human body. That’s when I truly understood the phrase “you don’t know what you’ve got until it’s gone.”
The day came when I lost my voice, and eating became difficult because my tongue was numb. It was that day that I was moved back to intensive care, and it was one of the most horrible and terrifying experiences of my life. I felt like a prisoner in my own body. The nurses at that time had so many patients to care for, and they couldn’t give me the attention I needed because I had to move, my whole body hurt, and I couldn’t. And besides not being able to move, I couldn’t even call out and tell them how I felt. It was hell. And I only had 15 minutes a day with one of my family members.
After the worst experience of my life, they moved me back to the room, and yes, the tests continued. They thought of tick-borne diseases, Guillain-Barré, and many other conditions. The doctors at my hospital held frequent conferences with other doctors, exchanging opinions and information.
While I kept getting worse, becoming thinner because I couldn’t eat anything, and everything I tried to eat (plus no appetite) I would vomit. I reached a weight of 42 kilos, and today I weigh 61kg.
People always ask what was going through my mind at that time... nothing. A cloud of uncertainty. All I could think about was going home, that this was just some kind of flu, and that I’d be better in two weeks. How naive of me. This was going to cost me more than two years of my life.
But I was very fortunate to have the most beautiful and beloved family in the world. My mother never left my side, and I can honestly say that all of this added 10 years to her life. In the end, much of the frustration and stress were hers. Inside my room, everything was relaxing music and positive vibes, but behind that door were tears and desperation. My grandmother, my uncles, cousins, friends, my boyfriend, who at the time played the role of nurse—he was the one carrying me from the bed to the bathroom, and many others who were there for me. Without them, I don’t know how I would have made it. I don’t think I’d be here telling you my story.
Katrina with the gastrostomy tube, doing physical therapy.
They decided to take me home after performing a gastrostomy, a tube connected to the stomach, to ensure I’d be able to eat. I took the whole hospital home with me—yes, seriously, I had a clinical bed, a suction machine, a team of nurses, the infamous “potty” for the bathroom because I couldn’t even sit on a toilet. Do you know what it’s like not being able to do number two sitting down? I had to learn how to do it.
They gave me a possible diagnosis: Post-Infectious Encephalomyelitis, Guillain-Barré type. What on earth is that? What’s that long name? No idea, but okay, let’s keep going.
My mood improved, along with the pain, and physical therapy began. Three times a day, but don’t think it was me moving myself. They were the ones moving me. I couldn’t move a finger (literally), so they came to move me. Slowly, over months, I regained my movement, starting with one finger, then my whole hand, then my arm, and so on. The same with my voice. After two months, suddenly, my voice came back, and we all burst out laughing. Because yes, sometimes you have to laugh to avoid crying.
Eight months later, we went to one of my favorite places in Venezuela, Isla Margarita, to get away from that “hospital” and enjoy some time.
Just before we left, we received a letter from my insurance, suggesting my mother have me tested for a possible disease. A thing called PORPHYRIA. At that time, that word meant nothing to me. But little did I know, those eight letters printed on that paper were going to change (again) my life... completely.
Like a thousand other times, I did the test, and we sent it to the United States. The results took two months.
We went to Margarita, taking all precautions—I was still in a wheelchair, we brought the nurse, the medications, EVERYTHING. We arrived on the island, and my back started hurting. Turned out to be a shingles infection. I bet you’re all thinking, “What else can happen to this girl?” That’s exactly how I felt.
Second (or third? I lost count) attack, and the symptoms started. Abdominal pain, and well, you know how it goes. I describe it like when you pour poison on a cockroach, and it twists and goes crazy on the floor. That’s exactly how I felt, like I was being poisoned from the inside.
Katrina, now recovered, boxing.
Back to the hospital, this time a very small one. It was at that moment, during the worst attack I’ve ever had, that the results of that famous test I did two months earlier came in.
POSITIVE.
From that moment on, everything changed.
We didn’t know what it meant, we didn’t know what the consequences would be, and of course, we didn’t know what to do. But yes, now we had a direction.
They airlifted me back to Caracas, my city, directly to the hospital. I had two of the worst seizures of my life, one of which left me unconscious. Intensive care, intense pain... But now, we had a path to follow.
To our surprise, we learned that porphyria is studied at the Venezuelan Institute of Scientific Research, in the Human Genetics department. And, to top it off, we had access to the medication, which they make in Venezuela. Who would have thought? Venezuela?! One of the countries with the most crisis in Latin America.
I rushed over there (well, in a wheelchair) to finally talk about what was happening to me, to discuss the next steps, and to diagnose the rest of my family. Out of four siblings, three had porphyria. And my mother, who is a twin and has 4 brothers, was the only one who was a carrier.
Everything began to improve after my diagnosis of Acute Intermittent Porphyria. A word that took me a while to learn but now is a part of my life. Does it define me? No, not at all. I know I’m much more than my disease, but I did have to learn to live with it.
“ I wasn’t going to let anything stop me. I wanted my life back—and better. I fought every day. I got up early to do any crazy thing my physiotherapists recommended. ”
-Katrina, AIP patient.
Slowly, I regained all my mobility. I took my first steps alone, fell a thousand times, had several porphyria attacks along the way, but I wasn’t going to let anything stop me. I wanted my life back—and better. I fought every day. I got up early to do any crazy thing my physiotherapists recommended. With them, I went to the mountains, still with limited movement in my feet, I had “learn to walk in heels” sessions because, as my grandmother used to say, “better dead than simple.” I even had driving lessons with them to learn how to drive again. No one was going to tell me I couldn’t be independent again.
Today, I can say I have a completely normal life. The only long-term effects I have are some scars and feet that haven’t fully regained their strength... but they don’t stop me from doing absolutely anything. What helped me move forward was setting goals and achieving them, one by one. Before the paralysis, I did fitcombat—a mix of martial arts and physical training—and after recovering, not only did I return... I became an instructor. That was my way of telling the world, “Yes, you can.”
But I also know that this whole journey could have been different. If someone had thought about porphyria on time, it would have saved me so much suffering. That’s why I get to use everything I lived through in my role as Director of Community Engagement at the United Porphyrias Association. I use my story and my strength to reach out to others walking this same difficult path, because no one should ever feel alone in their fight against porphyria. My mission is clear: to turn my past pain into support and hope for our entire community.
Seeing how one of my TikTok videos led someone to discover they had porphyria... is priceless.
“Studying rare diseases isn’t a luxury. It’s a responsibility. Because behind every case, there’s a person in fear, in pain, with life to live. And sometimes, all they need is for someone to listen... and think a little further.”
Think about Porphyria.
With love,
Katri.
Katrina’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
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