Meet Kay, AIP warrior
"I believe the overwhelming grief combined with those hormonal changes triggered a severe porphyria attack."
-Kay, AIP patient.
In 2019, we tragically lost our son, and at the same time, I entered menopause. I believe the overwhelming grief combined with those hormonal changes triggered a severe porphyria attack. At the time, we dismissed it as just the flu—and I thought I was being overly dramatic.
In 2021, we moved back to our hometown, but my symptoms only worsened. Thankfully, I found an exceptional doctor who never once doubted me or assumed I was faking it. He ran every test imaginable, yet nothing definitive showed up.
“When I arrived at the doctor’s office, my urine was strikingly red. I remember thinking, ‘What in the world?’”
-Kay, AIP patient.
Fast forward to 2022: I had lost 90 pounds and felt constantly ill. We ordered more blood work and another urinalysis. When I arrived at the doctor’s office, my urine was strikingly red. I remember thinking, “What in the world?” The moment he saw it, he suspected exactly what was happening, but he sent the sample for confirmation anyway.
Sure enough, the next week he called with the diagnosis: Acute Intermittent Porphyria (AIP). Soon after, he arranged for hemin treatment, and I began infusions.
Kay at the hospital with the support of her family.
Today, I can honestly say I feel much better overall, though I still struggle to feel consistently well. On my good days, my husband and I head down to our dock—we live on the lake—and go fishing. Heat and sun are tough for me, so we stick to early mornings or evenings, but those moments bring so much joy.
I’m deeply grateful for my doctor, who worked tirelessly to uncover the answer. It turns out he had treated one other porphyria patient in our small town, which is why he recognized the signs so quickly. I’m also thankful for our local hospital and infusion center—they’ve provided incredible care and made all the difference.
“Porphyria doesn’t have to define you. If you let it, you’ll stay trapped in that dark, sick place you’ve built around yourself. ”
Embrace your good days with everything you’ve got, be gentle with yourself on the bad ones, and always choose to love yourself through it all.
Kay’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
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