On June 15th, the topic of “Woman with Chronic Fatigue Found to Have Vampire Disease Gene” surged to the top of the trending list on Chinese social media platform Weibo, sparking public attention and discussion.
According to reports from various Chinese media outlets, a 52-year-old woman surnamed Lin, who was once a well-known salesperson at her company, has been feeling constantly weak. Initially attributing it to lack of rest, she was diagnosed with severe anemia. However, even after taking iron supplements, her condition worsened rather than improved.
Subsequently, Lin’s face and hands started turning yellow, she experienced extreme fatigue all over her body, and even found it difficult to walk. When she returned home one day after climbing from the first floor to the fourth floor, it took her nearly an hour. At her doorstep, she collapsed and was discovered by a neighbor who promptly contacted her family to rush her to the hospital for treatment.
The persistent fatigue and repeated medical examinations kept pointing towards “anemia”… Lin, who could barely manage her daily life, had to take extended leave from work and seek medical help far and wide. After visiting multiple places including Jiangsu, Zhejiang, and Beijing, a genetic sequencing analysis by a doctor confirmed that Lin had a mutation in her FECH gene, indicating she had Erythropoietic Protoporphyria, also known as “vampire disease.”
This rare condition, dubbed “vampire disease” due to the fear of light exposure, pale skin, insufficient hemoglobin levels, affects not only Lin but her entire family of four including her husband and two children, all carrying this gene mutation.
Erythropoietic Protoporphyria, also known as porphyria and porphyric diseases, has gained public recognition in recent years mainly because of its nickname “vampire disease.”
Porphyria occurs due to a deficiency in enzymes involved in heme biosynthesis pathway, leading to the abnormal accumulation of a compound called porphyrin or its precursors in the body tissues, resulting in cell damage and metabolic disorders.
Patients of porphyria may experience itching, burning, swelling, and pain upon sunlight exposure, just like vampires who are photosensitive, hence the moniker “vampire disease.” The symptoms also include severe abdominal pain, vomiting, constipation, muscle pain, weakness, numbness, seizures, mental disorders, and confusion.
The majority of porphyria cases are hereditary, with most gene carriers possibly remaining asymptomatic throughout their lives. The onset of the disease is often sudden and unpredictable, making it challenging to prevent effectively. Currently, treatment for this disease focuses on managing the symptoms and requires long-term medication and monitoring.
Chinese netizens have been actively discussing this news:
“What a strange disease, there are so many illnesses nowadays! It feels like watching a movie with all these bizarre diseases.”
“These days there are all kinds of strange diseases; I thought I was watching a movie. It’s quite scary. I feel so weak, I don’t even want to speak.”
“I feel exhausted every day – wanting to sit down while standing, wanting to lie down while sitting. I feel tired to the bone every day.”
“I am also fatigued and sleepy; this afternoon, I laid down and slept for a straight 5 hours. I can fall asleep while sitting or lying down; I just doze off wherever I am.”