She’s the real-life Count Dracula.
A woman’s rare “vampire disease” causes her to writhe in pain and could even be fatal if she ingests garlic, much like the mythical bloodsucking creatures.
Phoenix Nightingale, 32, has what is called “acute intermittent porphyria,” a very rare metabolic disorder that results in symptoms like pain, migraines, constipation and vomiting for days at a time if triggered.
Unfortunately for the Minnesota woman, her condition is triggered by an allergy to sulfur, which is found in garlic and could even result in a “fatal attack” if she ingests too much.
“People call it the vampire disease,” she told Jam Press.
The real-life Count Dracula, Vlad III, is suspected to have had the disorder, which inspired the fable of vampires who hate garlic and are sunlight averse.
“It comes from the legend about them needing to avoid garlic, having to stay out of the sun, looking pale and having receding teeth,” Nightingale explained.
“Neurological side effects can make people think that those with the condition must have been monsters or are possessed.”
The mom-of-two is forced to avoid any foods containing sulfur, as eating it in “high amounts or over an extended period could be fatal.” Symptoms, she added, can “come out of nowhere” or start to set in weeks ahead of an attack.
“I’m very careful about what I put in my body. I avoid a lot of food. I stick to the food that I know is safe. I can’t even take most medications,” she said.
“I haven’t eaten garlic since I was diagnosed. I could never eat garlic bread. It could send me into an attack,” she continued, describing her “life-threatening” attacks as two-day bouts of vomiting, sometimes 60 times over the course of an attack, and the potential for breathing difficulties.
Nightingale said that she’s experienced over 480 attacks over the course of her life as she searched her answers, desperate for a diagnosis that only came last year. The pain, she added, can’t even be remedied by prescription drugs, insisting that it is worse than giving birth.
“I had one attack where I didn’t go to hospital and it went on for 40 hours. It was non-stop vomiting, losing consciousness, screaming and crying,” she said.
“I’ve pushed out two children and it’s worse than childbirth. It’s agony.”
This makes dining at restaurants particularly challenging since garlic is a popular ingredient in many cuisines and she also avoids red grapes, soy, alcohol and coffee.
“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 and prefer to stick with my safe foods,” she explained.
She’s sharing her diagnosis publicly in the hopes of spreading awareness about the condition to anyone who might be struggling to find a diagnosis for their symptoms.
“It took 31 years to get diagnosed and I had to pay out of pocket and spend years running analytics on it,” she said, adding that she had to take matters “into my own hands.”
“It’s hard as a diagnosed person not being able to find a doctor who can help. When I see a doctor or go to hospital, they have to google the condition.”
Now, she’s hoping she can “help make changes in the medical system for mystery diagnoses and chronically ill patients.”
“There has to be more people out there suffering with it and being called crazy,” she said.
