A rare medical condition has forced 36-year-old Emily Richardson to structure her entire life around avoiding ultraviolet light. She describes herself as a “real-life vampire” because even brief exposure to sunlight can trigger a severe reaction that has previously required hospital treatment.

Emily’s reaction to sunlight became severe over several years.

Emily, who lives in Murfreesboro, Tennessee, first noticed something was wrong as a teenager. After spending time outdoors, her face would become red, swollen, itchy, and uncomfortable. The reactions gradually became more severe.

Her condition worsened significantly after she had COVID-19 in 2021. She was later diagnosed with Stevens-Johnson syndrome (SJS), a rare and potentially life-threatening reaction that can cause painful skin damage, blistering, and peeling.

Doctors believe Emily may have an underlying autoinflammatory condition that makes her unusually vulnerable to SJS. In her case, ultraviolet exposure appears to trigger a reaction.

She has been hospitalized several times after exposure. According to Emily, even about 30 seconds in the sun can trigger a severe reaction.

Stevens-Johnson syndrome is much more serious than an ordinary sun allergy.

SJS is usually associated with certain medicines, including some antibiotics, anti-inflammatory painkillers, and medications used to treat seizures. Infections can also play a role.

The condition affects the skin and mucous membranes. A severe episode can cause painful lesions, blisters, and areas where the skin peels away. The mouth and eyes can also be affected, making eating, drinking, and seeing difficult.

UV-triggered, or sun-distributed, SJS is exceptionally rare. Doctors believe that sunlight may trigger reactions in particularly vulnerable patients, rather than the condition being a straightforward allergy to sunlight.

For Emily, avoiding direct sunlight is therefore only part of the challenge. She also watches for light reflected from windows and other shiny surfaces. She uses clothing designed to block UV radiation, along with gloves, a hood, and other protective equipment when she needs to go outside.

She has also covered parts of her home to reduce the amount of sunlight entering the building.

Emily now spends much of her life indoors but uses her experience to help others.

The condition has dramatically changed Emily’s daily life. She had to leave her career as a real estate agent because her work required frequent social interaction and time outside.

She also says she lives with persistent pain and other health problems, including dizziness, joint instability, headaches, nerve pain, and muscle spasms.

Getting a diagnosis was itself a long process. Emily says several doctors initially dismissed the possibility that sunlight was causing her reactions. She eventually received further evaluation through the Undiagnosed Diseases Network, a US program that helps investigate difficult-to-diagnose conditions.

She now shares her experiences online and uses social media to raise awareness about rare illnesses. Her aim is to help other people recognize unusual symptoms and seek specialist care when their concerns are repeatedly dismissed.

Emily has also gone more than a year without experiencing one of her most severe reactions. However, she continues to take extensive precautions because another episode could potentially become serious very quickly.