Woman with ‘Dracula’ disease

Phoenix Nightingale, 32, has a rare metabolic disorder called Acute intermittent porphyria. Acute porphyrias result from a deficiency in certain enzymes in the synthesis of heme (a component of hemoglobin). Heme plays an important function in transporting oxygen, creating oxygen-carrying red blood cells. Porphyrin accumulates in tissues and blood, easily causing many different health problems from mild to severe.

The disease causes symptoms such as abdominal pain, migraines, constipation and vomiting for many days if exposed to a trigger. In the case of Nightingale, the trigger is sulfur, a substance found in garlic. If Nightingale eats too much garlic, she can suffer “a deadly attack”.

“People call it vampire disease,” she shared with Jam Press.

Vlad III Tepes is a real character in 15th century Romanian history with many mysterious anecdotes. After the death of the tyrant, mysterious horror stories about him continued to circulate and became the inspiration for writer Bram Stoker to write the novel Vampire (Dracula). Vlad III, who may have suffered from the disorder, helped inspire the fable of the vampire who hated garlic and was afraid of sunlight.

The mother of two is forced to avoid any food containing sulfur. If she eats them in large amounts over a long period of time, she can die. Symptoms can appear suddenly or begin weeks before an attack, she added.

“I’m very careful about the food I put into my body. I avoid a lot of foods, only consuming foods that I know are safe. I can’t even take most medications,” she shared.

Nightingale said she has experienced more than 480 pain attacks throughout her life as she searched for answers about the mysterious illness. It was only last year that she was properly diagnosed. However, she received bad news soon after. There is currently no prescription medication to cure this condition.

This makes eating at restaurants especially difficult, since garlic is a common ingredient in many dishes. In addition to garlic, she must also abstain from red grapes, soy, alcohol and coffee.

“When I go out to dinner, sometimes I look at the menu and cry because I don’t know what I can eat,” she explains.

The woman shared that it took her 31 years to look for symptoms, then was diagnosed. She had to pay out of her own pocket, spend a lot of time analyzing her medical condition, and going to the doctor. Therefore, she does not want anyone to experience the same situation. Nightingale publicly shared her diagnosis in hopes of raising awareness of the condition, helping to create changes in the medical system for mysterious illnesses.