A MUM-of-two says she lives in fear of dropping dead at the dinner table due to a condition known as “vampire disease”.
The rare disorder, known as acute intermittent porphyria, means Phoenix Nightingale has to avoid garlic at all costs.
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The 32-year-old could have a potentially “fatal attack” if she eats too much of the allium, which contains sulphur.
During an attack, she can suffer severe pain, migraines and constipation for three days at a time.
Eating garlic could also leave her vomiting up to 30 times a day, Phoenix said.
Her immune system crashes during an attack, causing her body to go into shock, meaning she could stop breathing.
Read more on rare diseases
As a result, eating sulphur-rich garlic could be fatal.
Porphyrias are a group of uncommon disorders caused by problems with the production of chemicals called porphyrins in the body, according to the NHS.
Porphyrins are the chemical building blocks of haem, which form haemoglobin, the component of red blood cells that allows oxygen to be carried around the body.
There are eight different types of porphyria disorders, which affect the skin and nervous system.
If the disorder is ‘acute’ – as in Phoenix’s case – the onset of symptoms can be rapid.
They can include stomach pain, nausea and vomiting, changes in blood pressure or increased heart rate, muscle weakness, paralysis, anxiety, confusion, hallucinations and seizures.
It’s believed that vampire myths – such as that of Count Dracula – sprung out of porphyria.
According to Michael Hefferon, assistant professor at the Department of Paediatrics at Queen’s University, some patients with porphyria suffer with sensitivity to light, receding gums that make teeth look like fangs, dark red urine – which led people of yore to think they were drinking blood – and aversion to garlic due to attacks.
“People call it the vampire disease,” Phoenix, of Robbinsdale, near Minneapolis, Minnesota, US, said.
“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.”
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The mum was first diagnosed with acute intermittent porphyria in August 2023.
“There’s too much sulphur in garlic and I have a sulphur allergy,” she said.
“I avoid sulphur 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 reaches a toxic load large enough to make it crash.
One attack went on for 40 hours. It was non-stop vomiting, losing consciousness, screaming and crying
Phoenix
“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 buildup, 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.”
What is acute intermittent porphyria?
Porphyria is the name given to a group of very rare metabolic disorders that occur when your body is unable to produce enough of a substance called haem.
Haem is required for many bodily functions.
It is a component of haemoglobin, a vital protein which helps transport oxygen around your body and the pigment that gives red blood cells their colour.
Acute porphyrias are characterised by attacks of pain and other signs of neurological distress.
The majority of people who inherit the disorder do not have attacks.
Where symptoms do occur, they are sudden and can last for days or weeks.
They can include:
- Anxiety, restlessness and insomnia
- Severe abdominal pain
- Pain in your arms, legs or back
- Vomiting and constipation
- High blood pressure (hypertension)
- Muscle pain, tingling, numbness, weakness or paralysis
- Confusion, hallucinations and seizures
- Breathing difficulties (respiratory paralysis), possibly requiring ventilation
- Reddish coloured urine
Acute attacks happen when the levels of porphyrins in your body become very elevated.
They range in severity and usually require having to go to hospital. In the worst case they may require emergency procedures to prevent death.
Source: British Liver Trust
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.”
DINNER DRAMA
Phoenix says going out for dinner is upsetting as she worries about what ingredients will be in her meal.
She said: “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 can’t 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.”
