Dr. Zhang Xiaofang, Deputy Head of the Department of Rheumatology and Immunology at the First People’s Hospital of Hangzhou (Zhejiang, China), stated that this is a rare disease with an incidence rate of only 1 in 50,000.
“Vampire Disease” Porphyria is a group of disorders caused by the abnormal accumulation of Porphyrin in the body due to a deficiency of certain enzymes or reduced or disrupted enzyme activity in the heme synthesis pathway. Porphyrin is used to create Hemoglobin— a molecule in red blood cells responsible for transporting oxygen throughout the body. The accumulation of Porphyria affects the nervous system and skin, leading to various disorders.
“Clinical symptoms related to the digestive and nervous systems include nausea, vomiting, diarrhea, dehydration, muscle pain, abdominal pain, anxiety, insomnia, excessive sweating, hallucinations, seizures, confusion, delusions, red urine, and personality changes. Notably, this disease causes skin symptoms when exposed to sunlight, such as blisters, itching, skin swelling, redness, and red urine. Because patients need to avoid sunlight, this condition is also referred to as the ‘vampire disease’” – Dr. Zhang Xiaofang explained.
Due to its extreme sensitivity to light, protoporphyria blood disorder is referred to as “vampire disease.” (Illustrative image).
Importantly, “vampire disease” is a condition that cannot be completely cured. Dr. Zhang Xiaofang warned: “If not addressed promptly, the disease can lead to electrolyte imbalances, respiratory issues, severe skin damage, liver and kidney dysfunction, and in severe cases, intestinal obstruction.”
There is no specific treatment for this condition, but symptoms can be managed. Symptoms can be triggered by exposure to certain medications, sunlight, smoking, alcohol or stimulants, excessive dieting, or infections.” Therefore, he advises patients to avoid alcohol, refrain from indiscriminate use of psychotropic drugs, ensure adequate sleep, avoid excessive stress, prevent severe infections, and maintain a healthy lifestyle.
