Meet Jagruti, AIP Warrior
By Jagruti Sanghvi
"Porphyria didn’t just affect my body. It tried to steal my identity. But I refused to let it win."
-Jagruti, AIP patient.
My journey with porphyria began early—I was just 10 years old when I was diagnosed with Acute Intermittent Porphyria (AIP). Before that, my childhood was filled with unexplained pain, dark urine, severe stomach cramps, vomiting, and weakness that no child should have to endure.
Doctors couldn’t understand what was wrong. I was dismissed, misdiagnosed, and constantly told, “it’s just stress” or “it’s all in your head” But even as a child, I knew something wasn’t right.
Getting the diagnosis at 10 finally gave my symptoms a name. But it didn’t make life easier. If anything, it made the reality more daunting.
“I was rushed to the hospital and admitted directly to the ICU, where I remained unconscious for an entire month.”
-Jagruti, AIP patient.
When I was just 13, I had my most terrifying encounter with porphyria. An acute attack hit hard—triggering severe seizures, unconsciousness, and a total breakdown of my body.
I was rushed to the hospital and admitted directly to the ICU, where I remained unconscious for an entire month.
Doctors were uncertain if I’d survive.
My family was losing hope.
Everyone prepared for the worst.
Jagruti at the hospital.
But somehow, I came back. I woke up weak, confused, and fragile—but alive. That month changed my life forever. It showed me how brutal porphyria can be, even at such a young age. It wasn’t just a diagnosis anymore—it became something I had to fight every single day.
While I’ve faced porphyria all my life, the past two years have been the hardest yet. I’ve experienced:
Back-to-back acute attacks, sometimes just weeks apart
Multiple hospitalisations, often in emergency situations
Severe electrolyte imbalances and nerve-related weakness
Excruciating abdominal and limb pain
Mental health crashes, anxiety, PTSD from hospital trauma
Days I couldn’t move, couldn’t speak, and felt like giving up
The attacks didn’t just affect my body—they took a toll on my emotions, my confidence, my future plans.
But each time, somehow, I stood back up.
Jagruti now.
I remember how happy and playful I used to be— a girl who dreamed of a bright future, only to face haunting challenges. Yet through all this pain, I've found purpose.
I co-founded Indian Porphyria Association, and actively contribute to the Ozonecare Lifesciences Society, to help patients, families, and doctors understand what porphyria really means.
Because no one should go through this journey alone.
No one should be dismissed like I was.
And no one should feel invisible.
“Porphyria took away a lot of my childhood, my health, and moments I’ll never get back. But it gave me something else—a reason to fight for others.”
I’m still healing. Still battling flare-ups.
But now I’m doing it not just for me—but for every silent warrior out there.
Jagruti’s before and after AIP.
Want to share your story? Contact us at katri@porphyria.org
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