Meet Claudia, VP Warrior
By Claudia
Curated by Katrina Parra
"As I tried to call emergency services, my legs gave out. Then my arms grew weaker—I couldn’t hold the phone."
-Claudia, VP patient.
My name is Claudia. I am 49 years old, from Germany, and I live with two rare diseases: Variegate Porphyria (VP) and Hypokalemic Periodic Paralysis (HypoPP).
On July 1, 2023, I had breakfast when a sudden wave of weakness hit me. I barely managed to reach the living room and collapse onto the sofa. Fear gripped me—I knew paralysis was coming. That day, I was alone: my husband and son were out, my mother was on vacation, and my best friend wasn’t answering. Thankfully, I had my phone. As I tried to call emergency services, my legs gave out. Then my arms grew weaker—I couldn’t hold the phone. It slipped from my hand onto the sofa. When it rang (likely my friend returning my call), I couldn’t answer. Tears streamed down my face.
The paramedics arrived within 10 minutes. A patient paralyzed "instantly"? They’d never seen it. Ten minutes later, my best friend rushed in—she’d grown worried after my unanswered call, knowing I’d been unwell for days. She rode with me in the ambulance.
I’d known about my Porphyria diagnosis for a few months. After a similar paralysis episode following a detox infusion with my family doctor a week earlier, I’d contacted my porphyria specialist. But he dismissed the connection: my lab values weren’t elevated enough, and sudden paralysis was "atypical" for Porphyria.
My mind raced. For 15 years, my body had betrayed me:
Pain everywhere: stabbing flank pain that woke me at 3 a.m., relentless back pain. Sleep became impossible.
Intolerances: fructose, histamine, fragrances, electrosmog, even metal worsened my pain.
Skin issues, exhaustion, and a crushing sense that my body didn’t belong in this world.
In short: I couldn’t eat, couldn’t go anywhere, and lived in constant agony.
I’d seen every specialist imaginable: family doctors, orthopedists, neurologists, neurosurgeons, rheumatologists, gynecologists, nephrologists, urologists, holistic practitioners, orthodontists, surgeons, physiotherapists, osteopaths, dermatologists, allergists, pain clinics—even tried Chinese medicine and psychotherapy.
I exhausted all options—insurance-covered or private. Desperate, I underwent facet joint denervation surgery for my back and flank pain. It failed, like every other treatment. Prescribed painkillers? They triggered heart issues and worsened my symptoms.
“Trapped in my own body, I could only listen as doctors and nurses talked about me like I wasn’t there.”
-Claudia, VP patient.
I’d poured money into private doctors, alternative therapies, and supplements, but nothing helped—my list of diagnoses only grew. My medical records now filled five folders, plus two more stuffed with my own notes and research printouts.
Now, as the ambulance sped away, I was paralyzed from the neck down. I’d reached my breaking point. Through tears, I begged my friend: “If this paralysis is permanent, take me to Switzerland for assisted dying. I can’t live like this.”
This wasn’t the first time. Over the past two years, paralysis had struck after dental work, back surgery, and even an eye procedure. Each hospital stay left me worse than before—until I took matters into my own hands. After yet another dismissive treatment, I researched relentlessly. That’s how I discovered porphyria.
The moment I watched a patient’s video, I broke down sobbing—a reaction I’d never had before. I knew. This was my answer. Through my health insurance, I found a specialized lab and underwent testing. The results confirmed it: Variegate Porphyria (VP) (later genetically traced to the PPOX gene). While VP can cause paralysis, my doctors insisted it wasn’t the culprit—my symptoms were "too sudden," and my levels "not high enough."
At the local hospital, my porphyria specialist recommended glucose infusions to prevent a full flare-up. The first infusion worked—I could move again! But five minutes after it finished, paralysis returned, crushing that fleeting hope. Then came a painkiller injection that left me unable to speak or open my eyes. Trapped in my own body, I could only listen as doctors and nurses talked about me like I wasn’t there.
Hours later, when my voice returned, I begged a nurse for water. She brought a sippy cup… and left it on the bedside table, just out of reach. “I can’t move,” I pleaded. She rolled her eyes, placed it on my bed, and walked out. The water sat inches from my parched lips—a cruelty I’ll never forget.
Glucose infusions offered brief reprieves, but each time, paralysis returned. I knew I had to escape that hospital—yet they refused to transfer me, claiming “there’s nothing wrong with you.” The moment I could grip my phone, I hired a private ambulance (cost: €3,000) to take me to a university hospital. But as I called my husband to discuss it, I watched in horror as my glucose drip ran dry. Within minutes, the paralysis reclaimed me. Another day lost.
“The medical team clearly suspected I was faking; how else could they explain my sudden paralysis when MRIs and spinal fluid tests showed nothing?”
-Claudia, VP patient.
I was certain this was a porphyria flare-up - I needed proof. I requested to send my urine to a specialized lab, but doctors refused. Even when I tried to arrange it myself (I had a catheter, so collection was easy), they blocked me from doing so. Outraged, I thought: "This is insane! It's my body, my urine - I'll test what I want!" I desperately needed documentation to access hemin infusions, which none of my local doctors understood.
For a torturous week, I remained hospitalized, cycling between full-body paralysis and brief mobility - entirely dependent on glucose infusions. 8 Their solution: discharge me to psychiatric care. I refused - I knew my mind wasn't the problem.
They sent me home via medical transport, still paralyzed and catheterized. My devastated husband and family took shifts caring for me as I lay helpless in bed. Then came a breakthrough: our health insurance doctor recommended a university hospital.
Two days later, during a brief window of movement, my husband bravely drove me there - terrified I'd paralyze en route. What if I stopped breathing? What if they turned us away? Halfway there, full paralysis returned. Staff had to carry me from the car into the clinic. But the moment they administered glucose and finally hemin, hope flooded through me.
After a week of 24/7 glucose and 5 days of hemin, the paralysis lifted. Though weakened for weeks, I finally had answers: my Porphyria markers were 5x above normal - lower than typical Acute Intermittent Porphyria (AIP) flares, but critically high for Variegate Porphyria (VP), an ultra-rare variant in Germany (perhaps 5-10 cases total).
South African VP patients (where it's more common) became my lifeline through WhatsApp. Their wisdom guided me where medicine failed. (To my support groups: Thank you!)
My specialist confirmed: VP flares show subtler biomarker spikes than AIP, but a 5-fold increase now qualifies as acute. At home, I relied on glucose tablets to stave off paralysis - until the next crisis hit weeks later...
Claudia feeling good.
The weakness hit like a tidal wave - I teetered on the edge of paralysis. No ambulances, I told myself. The local hospital had failed me too many times. Instead, my husband drove me two hours back to the university hospital. The familiar routine: glucose, hemin, another week-long admission.
Recognizing my severe case, doctors prescribed givosiran for acute porphyria. But the paralysis persisted. When they eventually stopped my glucose infusions, convinced givosiran should prevent attacks, my body rebelled violently - complete neck-down paralysis returned. The medical team rushed in, their startled faces forever etched in my memory as they whispered: "Not that we missed anything!" and restarted my glucose infusions.
This became my turning point. Discharged with fresh determination, I ordered comprehensive blood tests - every mineral, vitamin, and amino acid measurable. The shocking result? Perfect levels except for potassium - that familiar deficiency doctors had noted for years.
My frantic research led me to an American Periodic Paralysis Association page. There it was - a video showing a patient carried paralyzed into a clinic, mirroring my own experience. Chills ran down my spine. I devoured Dr. Cannon's lectures, identified the relevant genes, and paid privately for CACNA1S gene testing in Germany (bypassing insurance delays). The diagnosis: Hypokalemic Periodic Paralysis (HypoPP) - explaining why glucose initially helped then worsened my paralysis through potassium crashes.
Armed with this diagnosis, my doctor prescribed spironolactone, but it triggered another attack. The ER visit that followed was a nightmare - forced to wait among 50 noisy patients despite begging to lie down, I paralyzed in the registration chair, blood pressure spiking to 150/100, tears streaming as I gasped for air.
Through the Periodic Paralysis Support Network, I discovered life-changing solutions for my HypoPP:
Potassium bicarbonate (fast-acting) could abort attacks in 20 minutes - but required someone to administer it via sippy cup during paralysis
Using Siri to call my husband when my speech slurred
Meticulous trigger tracking revealed hormonal connections (paralysis at ovulation/menstruation) and other patterns
My body remains unpredictable - some paralysis has no clear trigger. But between givosiran, pain relief, potassium emergency protocols, and my incredible support network, I've reclaimed fragments of life. To fellow warriors: Your shared experiences save lives. To my husband and medical allies: Your belief in me makes the fight worthwhile.
“ Never give up! We keep going! Solutions will come!”
HypoPP still claims my body weekly - one day of full paralysis, many more spent sofa-bound with weakness. The old enemies remain too: food intolerances, allergies, chemical sensitivities still gatekeep normal life. Yet somehow, my body and I are finding balance. That sippy cup of potassium bicarbonate stays within reach, my lifeline during attacks. And between the crashes come golden days we cherish fiercely - proof that joy persists even here.
My husband’s mantra anchors us: “Never give up! We keep going! Solutions will come!” Simple words that carry me through the darkest hours. To him, to my global warrior family, to every researcher fighting for rare disease answers - thank you.
With hope,
Claudia
Claudia’s journey with VP.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
