An American woman’s battle with a rare and debilitating disease has captured attention for its eerie resemblance to vampire folklore. Phoenix Nightingale, 32, suffers from acute intermittent porphyria (AIP), a rare metabolic disorder that triggers excruciating pain, vomiting, and neurological issues when she consumes sulphur-containing foods, including garlic.
Her condition is so severe that ingesting garlic could potentially be fatal, sparking comparisons to the legendary bloodsucking creatures who were said to avoid the pungent herb.
"People call it the vampire disease," Nightingale shared in an interview with Jam Press, explaining how her life-threatening condition mimics some of the traits attributed to vampires in myths. "It comes from the legend about them needing to avoid garlic, having to stay out of the sun, looking pale and having receding teeth," she added, linking her illness to historical depictions of vampires like Vlad III, also known as Count Dracula.
For Minnesota-based Nightingale, the consequences of her condition are far from fiction. Her illness is triggered by sulphur, commonly found in garlic, red grapes, soy, alcohol, and even coffee. A single misstep in her diet could lead to agonising attacks, marked by vomiting as many as 60 times in just two days.
"I haven’t eaten garlic since I was diagnosed. I could never eat garlic bread. It could send me into an attack," Nightingale explained to Jam Press, revealing that she lives in constant fear of triggering her symptoms.
What is the ‘vampire disease’?
Acute intermittent porphyria is an incredibly rare disorder that affects the body’s production of haeme, an essential component of haemoglobin. Nightingale’s symptoms—severe migraines, abdominal pain, and neurological complications—can appear suddenly or weeks in advance, making her condition both unpredictable and life-threatening.
Despite suffering over 480 attacks in her life, Nightingale only received a diagnosis last year after years of unexplained pain and fruitless medical consultations. “It took 31 years to get diagnosed, and I had to pay out of pocket and spend years running analytics on it,” she said, expressing frustration with the healthcare system. “When I see a doctor or go to hospital, they have to google the condition.”
The rarity of her disease and the lack of awareness among medical professionals have left her feeling isolated and desperate.
Living with acute intermittent porphyria has radically altered Nightingale’s life, especially when it comes to food. Dining out has become a challenge, as she often finds herself unable to eat anything on the menu due to the prevalence of garlic and other dangerous ingredients. “When I go out for dinner, unless it’s a place I know, I look at a menu and I cry because I don’t know what I can eat,” she said.
Nightingale's mission is now clear—she wants to drive change in the medical community to ensure that others don’t have to endure the same painful journey to diagnosis. "I’m hoping I can help make changes in the medical system for mystery diagnoses and chronically ill patients," she said, advocating for more awareness and support for rare diseases like her own.
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