A mother whose seven-year-old daughter inherited her severe sun allergy revealed she is plagued by religious groups who believe their condition is “demonic.”
Kylie Szafranski, 30, of Phoenix, Arizona, was diagnosed with erythropoietic protoporphyria (EPP) — a rare genetic condition that causes skin to be hypersensitive to UV light — after suffering severe burns from a tanning bed at age 16 .
She later learned that her oldest daughter River has inherited a form of her sunlight allergy, where her skin breaks out in hives after being exposed to the sun.
The condition, known as “vampire disease,” is believed to be where the myth of the monsters originated centuries ago, as people who suffer from the condition avoid sunlight and are usually very pale due to chronic anemia.
Kylie Szafranski, 30, of Phoenix, Arizona, and her seven-year-old daughter River both have erythropoietic protoporphyria (EPP) — a rare genetic condition that causes skin to be hypersensitive to UV light
River is photosensitive, but also has an allergic reaction to sunscreen, known as allergic contact dermatitis. Her back and face are pictured after a severe allergic reaction to sunlight
Kylie, pictured with her husband and three-year-old quadruplets Theo, Gideon, Damon and Emery, says she’s received nasty comments online due to her condition
“I’ve been getting really shady stuff from people, mostly religious groups, about my sun allergy,” Kylie said.
“I’ve been called demonic and I’ve been told that my children, especially the quadruplets, are the product of witchcraft,” she said.
Kylie, who is also mother to three-year-old Theo, Gideon, Damon and Emery, first became aware of her allergy when she was 16 when her skin became severely burned and began to “peel to bits” after being in the tanning bed. had laid down.
“When I look back on my childhood, it was incredibly clear that I had serious sun problems that were never addressed.
River’s allergy is even rarer than her mother’s, affecting less than 1 percent of the population. May include rash, itchy skin, swelling and blistering, pictured LR
Symptoms of the genetic condition usually begin with tingling, itching, or a burning sensation, as well as redness and burning. Pictured, River’s bad reaction to the sun on her legs
Kylie became aware of her allergy when she was 16 when her skin burned badly and started ‘peeling in pieces’ after going under the tanning bed. She discovered River’s allergy (pictured on her stomach) when she broke out with hives as a baby. Left, Kylie’s chest after a severe allergic reaction
“But it wasn’t until I was 16 and tried a tanning bed for the first time that I realized something was wrong. It was so painful, but since I’d never used one before, I thought that was normal.
“But when I got out, I saw how red my skin was and then it started peeling off in pieces. I went to a doctor and after some testing we discovered that I had a severe sun allergy caused by a gene mutation.
It is also known as the ‘vampire disease’. In the Middle Ages, that was the condition they thought people had who were accused of being vampires.
‘People with EPP also have chronic anemia, which makes them feel very tired. They also look very pale with increased photosensitivity because they can’t come out in daylight. This contributed to the vampire myth.’
Kylie says she will teach daughter River, in the picture, smiling at the camera at home, that being unique is beautiful when she grows up
On the rare occasions when Kylie and her daughter (left) go outside, the couple takes precautions, including wearing UV-protective clothing and traveling in a car with specially tinted windows. Right, Kylie and River’s Dad Phillip
Kylie has worked to raise awareness of the condition online, saying that while most of the feedback has been supportive, she receives bizarre comments from trolls who say her quadruplets are the “product of witchcraft.”
Kylie, who is married to Phillip, 41, (left), said she finds humor in the vampire comparison and often jokes about the condition with her family and friends
Kylie and her daughter suffer from slightly different sun allergies – while Kylie acts when she goes out in the sun, River has a more severe reaction just from applying sunscreen or lotion.
She said: “When my daughter River was born, I had no idea she would also have a sun allergy because it’s so rare. Someone put sunscreen on her as a baby, without asking us first.
WHAT IS ERYTHROPOIETIC PROTOPORPHYRIA?
Erythropoietic protoporphyria (EPP) occurs when something goes wrong with the production of chemicals known as porphyrins.
This causes the chemicals to build up and leads to increased sensitivity to sunlight.
Symptoms begin with tingling, itching, or burning, as well as redness and burning.
These usually occur within minutes of exposure to sunlight and can take days to resolve.
In rare cases, EPP patients may develop liver disease.
EPP is hereditary, but many families are unaware that they carry a gene for the condition.
There is no medicine.
Treatment is largely focused on avoiding sunlight.
Source: British Skin Foundation
“When she got out into the sun, she swelled up, broke out in hives, and blew the capillaries into her skin. River is photosensitive like me, but has an allergic reaction to sunscreen known as allergic contact dermatitis.
Her allergy is even rarer, affecting less than 1 percent of the population. It may include a rash, itchy skin, swelling, and blistering.
“This is different from me because I’m not allergic to sunscreen, although it doesn’t work for me, which isn’t uncommon for people with EPP.”
On the rare occasions when she and her daughter go outside, the couple takes precautions, including wearing UV-protective clothing and traveling in a car with specially tinted windows.
The mother, who is married to Phillip, 41, said she finds humor in the vampire comparison and often jokes about the condition with her family and friends.
Kylie has worked to raise awareness of the condition online, saying that while most of the feedback has been supportive, she receives bizarre comments from trolls who say her condition is “demonic.”
But Kylie said she will never let the bullies hurt her and that she will teach daughter River that being unique is beautiful when she grows up.
“I’ve been getting really shady things from people, especially religious groups, about my sun allergy. I have been called demonic and have been told that my children, especially the quadruplets, are the product of witchcraft,” she said.
‘People are crazy. I have been told that I am a child of Satan because evil things live in the dark.
“I never let it get to me, I know people are crazy. It’s actually kind of funny that people can think like that.
“I always tell all my children that they are special and beautiful. River is such a strong little girl and I know she will be fine.
“All I want to do is raise awareness and educate people about the reality of sun allergies because a lot of people think they don’t even exist. The more education and awareness we can bring to the public, the better.’