For more than 30 years he has lived as Dracula and now he wants to let everyone know. It’s the story of Phoenix Nightingale32 years old and mother of two children, who after years of attacks of vomitcrisis neurological and of hospitalizations discovered that the main cause is in thegarlicand which could even prove fatal for her. But it’s not a simple one allergy: the illness from which he suffers – the «acute intermittent porphyria» – is a very rare metabolic pathology which, if triggered, causes symptoms such as pain, migraine, constipation And vomit for whole days. People, the woman explained, call her «vampire disease“; it is suspected, in fact, that the Count Dracula, Vlad IIIwas suffering from this disorder, which inspired the fable of vampires who hate thegarlic and are averse to sunlight. «The side effects neurological they can lead others to think that people with the condition were gods monsters or they are owned», he comments Phoenix explaining that he decided to tell his story so that those who suffer from his same story illness don’t feel alone: «There must be more people out there who suffer from it and who are called crazy».
But how do you live with the «vampire disease“? The woman, who lives in Minnesotasays she is forced to avoid any food it contains sulfurbecause eating it in «high quantities or for a prolonged period could be fatal». THE symptomshe added, can “appear out of nowhere” or begin to appear weeks before a attack. «I am very careful about what I put in my body. I avoid many foods. I limit myself to foods that I know are safe. I can’t even take most of the drugs“, he said.
Specifically, it continues Phoenix«I don’t eat garlic since I was diagnosed. I could never eat garlic bread. It could make me have attacks that are dangerous for me life». These are cases of vomit for two days, sometimes 60 times during an episode, even with difficulty respiratory.
Nightingalereports the New York Postcounted more than 480 attacks throughout his life, as he searched for answers, desperate for one diagnosis which only arrived last year. The painhe added, can’t be fixed even with prescription drugs, insisting that it’s worse than I’m leaving. «I had a attack where I didn’t go to hospital and it lasted 40 hours. Uninterrupted vomiting, loss of consciousnessscreams and cry», he said.
“I gave birth to two babies and it’s worse than I’m leaving. It’s aagony». All this makes it particularly difficult to dine at restaurantgiven that thegarlic is a popular ingredient in many cuisines, and the woman also avoids thered grapesthe soythealcohol and the coffee. «When I go out to dinner, unless it’s somewhere I know, I look at the menu and I cry because I don’t know what I can eat and I prefer to stick to safe foods», he explained.
Not only that. Given the rarity of the pathology it’s not easy to find doctors get ready: «When I go to a doctor or in hospitalthey have to search on Google my condition.” The hope of Phoenix now is to be able to «contribute to changing the medical system for diagnoses mysterious and the sick chronic».
What is porphyria: symptoms and causes
There porphyria is a group of rare diseases, of genetic origin, which affect the metabolism ofhemean essential component of hemoglobin, the protein that carries oxygen in the blood. Porphyria occurs due to a defect in one of the enzymes needed for heme synthesis, leading to the buildup of porphyrins, precursor chemicals to heme, which become toxic when they reach high levels in the body.
Why it’s called “vampire disease”
Porphyria is often associated with vampires due to symptoms that may recall some mythical characteristics of vampires. This connection derives from some typical clinical manifestations, in particular:
- Photosensitivity: Many forms of porphyria cause extreme sensitivity to sunlight, resulting in skin lesions, blisters, and skin damage, as in the myth of vampires who avoid daylight.
- Anemia: Some people with porphyria suffer from chronic anemia, which can cause paleness, a characteristic often attributed to vampires.
- Aversion to garlic: Vampires are said to fear garlic, and in some forms of porphyria, garlic can trigger acute seizures as it contains sulfur compounds that worsen symptoms.
- Neurological problems: Porphyria can cause neurological and psychiatric crises, leading to altered behaviors that, in the past, could be interpreted as “possessions” or monstrous behavior.
Types of porphyria
Porphyrias are divided into two main categories:
- Hepatic porphyrias: the main symptoms concern the nervous system and include abdominal pain, vomiting, mental confusion, convulsions and neuropathies. An example is the acute intermittent porphyria.
- Erythropoietic porphyrias: they mainly affect the skin, causing increased sensitivity to light and skin damage. There erythropoietic protoporphyria and the porphyria cutanea difficile fall into this group.
Symptoms of porphyria
Symptoms vary by type, but can include:
- Abdominal pain intense
- Migraines
- Nausea and vomiting
- Constipation
- Neurological crises: confusion, convulsions, hallucinations
- Photosensitivity: skin lesions, blisters and scars
- Dark colored urine (reddish or brown) due to the accumulation of porphyrins
Causes
The causes of porphyria are related to genetic mutations which compromise the production of heme. External factors such as taking medications, exposure to certain chemicals, alcohol consumption or infections can trigger a crisis in susceptible patients.
Treatment
There is no definitive cure for porphyria, but management is based on:
- Avoid triggers (alcohol, some drugs, stress)
- Medicines to relieve symptoms
- In some cases, blood transfusions or administration of hemin (heme derivative) to reduce the accumulation of porphyrins.
In summary, porphyria is a complex disease which, due to its peculiar symptoms, has been associated with the myth of vampires, especially due to photosensitivity and aversion to garlic.