"Sunlight Exposure Worse Than Childbirth Pain"…The Identity of 'Vampire Disease' Experienced by Women in Their 30s

English woman Samantha Koster suffers from 'Porphyria'
Pain, itching, and skin lesions caused by sunlight
"Worse than childbirth"... Caused by deficiency of a specific enzyme

A story about a woman who cannot go out in the sunlight due to the so-called 'vampire disease' has become a hot topic.

Recently, the British media outlet 'NeedToKnow' reported the story of Samantha Koster (39), who lives in Milton Keynes, England. Koster suffers from 'porphyria,' a rare disease designated as incurable in some countries. When she goes out in the sun, pain and itching begin within 5 to 10 minutes, and due to the severe pain, she cannot leave the house for several days. She said, "It is unlike any pain I have ever felt," and described it as "more painful than childbirth."

Samantha and her family. [Image source='NeedToKnow' news footage capture]

Samantha was diagnosed with the disease six years ago, but the symptoms first appeared when she was about four years old while camping with her parents. She suddenly started screaming in pain and was rushed to the hospital. However, the doctor who examined her suspected heatstroke and no other treatment was given. It is reported that she continued to suffer pain whenever she went out in the sun. When she was eight, she went to the beach with her mother and her hands and feet swelled up. She screamed and cried in pain again, but the doctor once again diagnosed heatstroke. Such incidents repeated several times a year, and although she frequently visited hospitals, she did not receive a proper diagnosis until she was 33 years old.

When she goes outside, she has to find shade, and on sunny days, she cannot go out at all. Even in midsummer, she must wear clothes that cover her entire skin and use a parasol. Because she cannot be exposed to sunlight, her face is always pale, and she has to take vitamin D and iron supplements to compensate for the lack of nutrients. As a mother of three children, she emotionally struggles most with not being able to go to the beach or park with her husband and children.

Porphyria is a rare disease caused by a deficiency of a specific enzyme, occurring when there is a problem in the production of a chemical called porphyrin in the body. Porphyrin is a protein that helps hemoglobin bind with iron and is abundant in the pigment of red blood cells. To convert porphyrin into hemoglobin, a specific enzyme is required, and if this enzyme is deficient due to congenital or acquired genetic defects, excessive accumulation of porphyrin occurs, causing abnormalities in the body.

The main symptoms are skin lesions. Specifically, photosensitivity causes areas exposed to sunlight to peel as if burned, and hypertrichosis occurs. Severe abdominal pain, nausea, and vomiting are also common, and in cases of severe anemia, the skin becomes pale, and structural changes such as gradual shrinking of the gums appear. Eventually, the teeth become elongated, leading to the nickname 'vampire disease.' In severe cases, patients may also suffer from depression, anxiety, hallucinations, and seizures.