A mum who has a rare condition known as ‘vampire disease’ could die if she eats garlic.
Phoenix Nightingale was diagnosed with acute intermittent porphyria in August 2023.
The 32-year-old could have a potentially “fatal attack” if she eats too much sulphur.
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During an attack, she can suffer with severe pain, migraines, constipation and vomiting for three days at a time.
Her immune system crashes, she could stop breathing and her body goes into shock.
Eating garlic could be fatal for Phoenix as it’s so high in sulphur.
According to the NHS website, porphyrias are a group of uncommon disorders that are caused when there are problems with the production of chemicals called porphyrins in the body.
Symptoms include sensitivity to sunlight, fatigue, pale skin and an aversion to garlic, which are also associated with vampires.
It’s believed that Count Dracula suffered from the disease and that the myth of vampires originated from the disorder.
“People call it the vampire disease,” Phoenix, of Robbinsdale, near Minneapolis, Minnesota, US, told Need To Know.
“Count Dracula had it. It comes from the legend about them needing to avoid garlic, having to stay out of the sun, looking pale and having receding teeth.
“Neurological side effects can make people think that those with the condition must have been monsters or are possessed.
“There’s too much sulphur in garlic and I have a sulphur allergy.
“I avoid sulphurs in general. Eating garlic in high amounts or over an extended period could be fatal.
“I haven’t eaten garlic since I was diagnosed. I could never eat garlic bread. It could send me into an attack.
“Attacks happen when the body reached a toxic load large enough to make it crash.
“It’s life threatening for me. When I have an attack, my body wants to exit everything.
“I’ll puke 60 times over two days. I can stop breathing and it can cause paralysis.
“I’ve almost died.
“Different foods and things I ingest can make me have an attack.
“Sometimes there can be a build up so if I have small amounts of a certain food over a few days.
“Symptoms can start one to two weeks before an attack or it can come out of nowhere.”
The mum-of-two says she’s suffered with symptoms since she was a baby but struggled to get a diagnosis as the condition is so rare.
She has had more than 480 attacks in her life and says that they’re “more painful than childbirth”.
Phoenix said: “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.
“It was horrific pain that prescription pain medication hardly touches.
“I’ve pushed out two children and it’s worse than childbirth. It’s agony.”
Phoenix says going out for dinner is upsetting as she worries about what ingredients will be in her meal.
She said: “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.
“I cant eat red grapes, coffee or soy and I can’t have any alcohol at all.”
She is sharing her story to help raise awareness of the condition as it took Phoenix 31 years to get a diagnosis.
Phoenix said: “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.
“It took 31 years to get diagnosed and I had to pay out of pocket and spend years running analytics on it.
“I had to take it into my own hands.
“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.
“It’s been a huge struggle for me.
“I have been through so much with my health so I’m very passionate about getting my health stable enough that I can someday 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.”
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