Woman says she's a 'real-life vampire' due to rare condition that leaves her hospitalised after minutes in the sun

Emily Richardson calls herself a ‘real life vampire’ due to a super rare reaction to the sun that can leave her hospitalised after just minutes in the sun.

Emily, from Murfreesboro, Tennessee in the US, breaks out in blisters and burns almost as soon as she steps into the sun and fears her severe reactions could one day prove fatal.

She has been diagnosed with Stevens-Johnson syndrome (SJS), a rare and potentially life-threatening skin condition, and says even a few seconds of UV exposure can trigger a severe reaction.

As a result, 38-year-old Emily //is our house style to use first or last names// now sleeps during the day and is awake all night, and if she does have to venture outside during daylight she has to go to extreme lengths to keep safe wearing a full-cover UV protection or Ultraviolet Protection Factor (UPF) gear.

“I do everything I can to avoid sun exposure,” she told LADbible.

“I’m living in as much of a bubble as I can. I have to stay hyper-vigilant, which causes a lot of anxiety.”

Not only does Emily have to avoid direct sunlight, she even has to look out for shiny surfaces, including mirrors and windows which can bounce light off and cause a reaction.

She first noticed she had an unusual reaction to sunlight in her teens

Emily first noticed an unusual reaction to the sun while she was a teen, and the reactions continued to worsen over the years.

She explained that her doctor currently believes she was born with a rare autoinflammatory disease that makes her prone to SJS, which was exacerbated after she got Covid in 2021 and she’s since been hospitalised four times due to her severe reaction which leaves her with excruciatingly painful blisters and ulcers.

Alongside that, Emily says ‘every SJS reaction did more damage to my body and made me more sensitive to sunlight’.

Describing one of her reactions, Emily explained: “The top several layers of my skin die and fall off, because it attacks the mucosal membrane, which is all of our skin but also the eyes, nose, mouth, genitals, oesophagus and organs.

“When it appears on my skin it creates lesions that blister and fill with fluid and then die and fall off.

“Think of it like third-degree burns but it burns from the inside out.”

And Emily says each SJS reaction she has had done more damage to her body and made her more sensitive to light.

As well as being highly sensitive to the sun, Emily’s SJS is also triggered by medications, including super common drugs like ibuprofen and amoxicillin and those typically used to treat her symptoms.

It can 'escalate frighteningly fast'

Her path to getting a diagnosis was difficult. Emily tells us she was dismissed by doctors for years with many refusing to believe that she had an allergy to the sun.

She finally began to get some answers after undergoing testing through the Undiagnosed Disease Network (UDN) - a specialist programme that hat brings together medical experts to helps patients with rare and unexplained illnesses get answers - that a doctor finally suggested that it could be SJS in 2024.

“There is a connection between SJS and sun sensitivity but it’s so under-researched,” she explained.

“Most doctors who treat SJS don’t know that there’s a connection between it and sun sensitivity - but once you get up to more specialists they know, and that’s who I’m with now, thank God.”

Although gaining the diagnosis was a huge milestone for Emily, she’s frustrated that it took so long.

Leading NHS plastic surgeon Dr Anil Joshi, who is not one of Emily’s doctors, told LADbible “calling herself a ‘living vampire’ may sound dramatic but it is absolutely understandable."

“For a patient like this, even brief sunlight exposure can provoke a severe skin reaction requiring hospital care.

“The important nuance is that Stevens–Johnson syndrome, or SJS, is not typically a simple sun allergy. In the NHS we describe it as a rare, serious disorder in which the skin becomes painful, blistered and prone to peeling, often after a medicine and sometimes after an infection.

“In exceptionally unusual cases, ultraviolet light appears to act like a match dropped onto already vulnerable skin. Doctors describe this as photodistributed SJS: the reaction is concentrated on sun-exposed areas, although another trigger, commonly a drug, may still be involved. The immune system attacks cells in the outer skin layer, damaging the body’s protective seal. Mouth, eyes and genital areas may also be affected.

“It can escalate frighteningly fast, without warning. Painful blistering, peeling skin or swelling of the mouth, face or eyes is an emergency and a patient should call 999 or go straight to casualty.”

"I'm in pain from the second I wake up"

Even when Emily avoids the sun and her other triggers, life is still incredibly difficult.

She says that her SJS reactions have weakened her immune system and she now lives with other debilitating illnesses including hEDS, POTS, and fibromyalgia.

“I'm in pain from the second I wake up to the second I finally fall asleep,” she said. “I am constantly dealing with unstable joints, headache, dizziness, nerve pain, muscle spasms and overall weakness that comes and goes

Despite all of this, Emily tries to remain as positive as possible. While still attempting to find answers for her condition, Emily turned to TikTok where she has amassed tens of thousands of followers and more than a million likes. Now, she uses her platform to share an insight into her life and to advocate for others who may be living with rare or unusual conditions and are on the hunt for answers.

“If I listened to the doctors and ignored my body, I would be dead,” she said.

She explained: “When people say to me, ‘oh you’re so brave’ I think, ‘well what other choice do I have?’”

“I never wanted to be an influencer, but once I started sharing my story, I realised that there are so many other people going through the same struggles, just with their own story,” she said.