Young woman in China diagnosed with rare vampire disease

A 20 year old woman from Hangzhou, Zhejiang province in China, experienced a dramatic health scare when her menstrual cramps, which had been a discomfort since adolescence, suddenly took a turn for the worse over the past year.

Her family, concerned by the increasing severity of her symptoms, sought medical help but to no avail, as no health issues were initially detected. Consequently, she resorted to painkillers and restricted her movements during her periods.

However, the situation escalated when her menstrual pain became alarmingly abnormal. Typically enduring mild pain during the first two days of her period, she now faced intensifying agony over four days, accompanied by fever, sensitivity to food smells and sunlight, and a notably pale complexion.

In a disturbing development, her urine turned red, which was initially attributed to her menstrual cycle until she repeatedly vomited a mysterious black fluid, and her skin exhibited blistering. Following these symptoms, her family urged her to visit Hangzhou People’s Hospital No. 1 for further investigation.

Unexpectedly, the obstetrics department found no issues as before, and her abdominal pain wasn’t related to her liver or gastrointestinal tract. However, a significant drop in her blood sodium levels and other peculiar symptoms prompted the hospital to assemble a swift interdisciplinary consultation team led by Zhang Xiaofang, deputy head of rheumatology and immunology.

After extensive testing and evaluation, Zhang announced the final diagnosis: erythropoietic protoporphyria (EPP), also known as vampire disease, which shocked the young woman, who initially thought it was a joke, having only heard of such a condition in movies.

EPP, or vampire disease, is an extremely rare condition, affecting only one in every 50,000 individuals. It is characterized by an abnormal accumulation of porphyrins in the body due to a deficiency or malfunction of certain enzymes, affecting the nervous system and skin.

The disease manifests through a range of gastrointestinal and neurological symptoms such as nausea, vomiting, diarrhoea, dehydration, muscle pain, abdominal pain, anxiety, insomnia, excessive sweating, hallucinations, seizures, confusion, paranoia, red urine, and personality changes. The skin reacts notably to sunlight with swelling, itching, redness, and puffiness, leading to the term vampire disease due to the need to avoid light.

Vampire disease symptoms

Zhang emphasized the incurability of vampire disease, warning that without prompt treatment, it could lead to electrolyte imbalance, respiratory issues, severe skin damage, liver and kidney dysfunction, and, in extreme cases, intestinal blockage. While there is no specific treatment, symptom management is possible.

Triggers include certain medications, sun exposure, smoking, alcohol, stimulants, excessive fasting, or infections. Therefore, patients are advised to avoid alcohol, get sufficient sleep, manage stress, prevent severe infections, and generally maintain a healthy lifestyle.

The diagnosis of vampire disease for this young woman is a reminder of the complexities of rare medical conditions and the importance of thorough investigation when common ailments take an unexpected turn.