by Paola Cagnoni
When it comes to vampiresthe collective imagination immediately flies towards Dracula, bats, and, obviously, garlic. But for Phoenix Nightingale, 32 years oldmother of two and resident of Minnesota, reality is surprisingly similar to fiction. Phoenix, in fact, suffers from a very rare pathology called acute intermittent porphyriabetter known as the “vampire disease”which requires her to live a life that is nothing short of out of the ordinary. And yes, garlic it can actually kill her.
Over 30 years of mystery and suffering
Phoenix spent over 30 years without a diagnosis, between neurological crises, vomiting attacks and hospitalizations, until the answer finally arrived: acute intermittent porphyria. It’s one metabolic disease which can cause debilitating symptoms such as migraines, severe pain and vomiting for days. “It’s like living with one time bomb inside you,” Phoenix explained, “you never know when it will explode.”
The pathology is so rare that most doctors have to do Google searches to figure out how to deal with it when Phoenix shows up at the hospital. “It’s worse than childbirth”, says the woman, referring to the unspeakable pain caused by this condition. In some cases, Phoenix has suffered attacks that have lasted over 40 hoursaccompanied by uninterrupted vomiting and loss of consciousness.
No garlic, really
If for many of us garlic is just a tasty ingredient that at most can cause breath problems, for Phoenix it is a matter of life or death. “I haven’t eaten garlic since I was diagnosed with porphyria,” she says. A small clove could trigger a violent attack and potentially lethalwith continuous vomiting and breathing difficulties. “I could never eat garlic bread. It could cause a life-threatening attack.”
Living “like a vampire”: food restrictions and daily challenges
Phoenix’s life is full of limitations. Not only should you avoid garlic, but also foods such as red grapes, la SOYBEANl’alcohol and even the coffee. “When I go out to dinner, if I don’t know the restaurant, I look at the menu and I want to cry,” he says. A bitter irony, if we think that for many of us a dinner out is synonymous with pleasure, while for Phoenix it is a potential minefield.
Food restrictions are just part of the daily battle. Also drugs which for others could be decisive in combating states of discomfort often dangerous for her. This makes every attack a survival challenge with no immediate solutions.
The battle for medical recognition
Another dramatic aspect of Phoenix’s life is the difficulty in finding doctors who they know what to do. “When I go to a doctor, they often have to Google my condition.” Management and diagnosis of such an unusual pathology are indeed difficult in difficulty the medical staff.
But Phoenix doesn’t give up. His hope is that of raise public awareness and health facilities, so that those suffering from illnesses rare or chronic how you can find help more easily. “There must be other people out there like me. Unfortunately, when you have to face certain tests there are those who he thinks you’re crazy”. A suffering that is added to the physical one, and which the courageous American mother no longer intends to face.
