She is Count Dracula in real life.
A woman’s rare “vampire disease” makes her writhe in pain and can be fatal if garlic is ingested, just like the mythical bloodsucking creatures.
Phoenix Nightingale, 32, has what is called “acute intermittent porphyria”, a very rare metabolic disorder that results in symptoms such as pain, migraines, constipation and vomiting for days when triggered.
Unfortunately for the Minnesota woman, her condition is caused by an allergy to sulfur, which is found in garlic and can even result in a “fatal attack” if too much is ingested.
“People call it the vampire disease,” she told Jam Press.
The real Count Dracula, Vlad III, is believed to have had the disorder, which inspired the fable of the garlic-hating, sunlight-averse vampire.
“It comes from the legend about those who should avoid garlic, should stay out of the sun, look pale and have receding teeth,” Nightingale explained.
“The neurological side effects can make people think that those with the condition must have been monsters or possessed.”
The mother-of-two has been told to avoid any food containing sulphur, as eating it in “high amounts or over a prolonged period can be fatal”. Symptoms, she added, can “come out of nowhere” or start appearing weeks before an attack.
“I am very careful about what I put in my body. I avoid many foods. I stick to food that I know is safe. I can’t even take most of the medicine,” 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 during an attack, and the potential for difficulty breathing.
Nightingale said she has experienced more than 480 seizures in her lifetime as she searches for answers, desperate for a diagnosis that only came last year. The pain, she added, can’t be cured even with prescription drugs, insisting it’s worse than childbirth.
“I had an attack where I didn’t go to the hospital and it went on for 40 hours. It was non-stop vomiting, passing out, screaming and crying,” she said.
“I have expelled two children and it is worse than childbirth. It’s agony.”
This makes dining out particularly challenging as 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 cry because I don’t know what I can eat and I prefer to stick to my safe foods,” she explained.
She is sharing her diagnosis publicly in hopes of spreading awareness of the condition to anyone who may be struggling to find a diagnosis for their symptoms.
“It took 31 years to be diagnosed and I had to pay out of pocket and spend years getting tests done for it,” she said, adding that she had to take matters “into my own hands.”
“It is difficult for a diagnosed person not to be able to find a doctor who can help. When I see a doctor or go to the hospital, they have to Google the condition.”
Now, she hopes she can “help make changes in the medical system for mystery diagnoses and chronically ill patients.”
“There should be more people suffering from this and being called crazy,” she said.
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