Decoding the rare, incurable disease called 'vampire disease'

Dr. Zhang Xiaofang - Deputy Head of the Department of Rheumatology and Immunology of Hangzhou No. 1 People's Hospital (Zhejiang, China) said that this is a rare disease with an incidence of only 1/50,000.

'Vampire disease' Porphyria is a group of diseases caused by abnormal accumulation of Porphyrin in the body due to deficiency of certain enzymes or reduced enzyme activity in the heme synthesis pathway or other disturbance. Porphyrin is used to create hemoglobin - the molecule in red blood cells that carries oxygen throughout the body. Porphyria accumulation affects the nervous system and skin, causing disorders.

'Gastrointestinal and neurological clinical symptoms such as: nausea, vomiting, diarrhea, dehydration, muscle pain, abdominal pain, anxiety, insomnia, excessive sweating, hallucinations, convulsions, confusion, paranoia, red urine, personality changes. In particular, this skin disease causes symptoms when the skin is exposed to sunlight such as: blisters, itching, skin swelling, red skin and red urine. Because patients need to avoid light, this disease is also called vampire disease' - said Dr. Zhang Xiaofang.

Because it is very sensitive to light, the blood disorder protoporphyria syndrome is called 'vampire disease'. (Illustration).

The important thing is that 'vampire disease' is a disease that cannot be completely cured. Dr. Zhang Xiaofang warns: 'If not treated promptly, the disease can cause electrolyte disorders, respiratory problems, serious skin damage, liver and kidney function abnormalities, and intestinal obstruction in the severe case.

There is no specific treatment for the disease, but symptoms can be controlled. Symptoms can be triggered by exposure to certain medications, sun exposure, smoking, alcohol or stimulants, excessive dieting, or infection. Therefore, he advises patients to avoid drinking alcohol, using psychotropic drugs indiscriminately, ensure enough sleep, avoid excessive stress, avoid serious infections and have a healthy lifestyle.