A mother whose seven-year-old daughter inherited her severe sun allergy revealed she’s trolled by religious groups who believe their condition is ‘demonic’.
Kylie Szafranski, a 30-year-old woman from Phoenix, Arizona, was diagnosed after she suffered severe burns from a sunbed.
She later discovered her eldest daughter River has inherited a form of her sunlight allergy, with her skin breaking out in hives following sun exposure.
The condition, also known as the “vampire illness”, is believed to be where the legend of the monsters originated. People who have the condition are unable or unwilling to take in sunlight and are often very pale due to chronic aemia.
Kylie Szafranski (aged 30) and River Szafranski (7 years old) both have Erythropoietic Protoporphyria. EPP is a rare genetic condition that makes the skin hypersensitive to ultraviolet light.
River is photosensitive and also has an allergic reaction known as allergic contact dermatology. After suffering severe allergic reactions to sunlight, her back and face are shown.
Kylie, pictured here with her husband and three year-old quadruplets Theo Gideon Damon and Emery.
Kylie stated that she has received some very dark comments from people, mostly religious, about her sun allergy.
She stated that she was called demonic by her and that she was told that my children, especially the quadruplets were the product of witchcraft.
Kylie, who is also the mother of three-year-old Theo Gideon, Damon, Emery, was 16 when her skin started to ‘peel off in chunks’ following a tan.
“Looking back on my childhood, it was obvious that I had severe sunburns that were never treated.
River’s allergic reaction is much rarer than her mother, as it affects less than one percent of the population. It can cause a rash, itchy skin and swelling, as well as blistering. pictured L-R
The symptoms of the genetic disorder include tingling, itching, burning, and redness and burning. Pictured, River’s bad reaction to the sun on her legs
Kylie became aware of her allergy at 16 when her skin became severely burned and started ‘peeling off in chunks’ after going on a tanning bed . River’s allergy was discovered when River broke out in hives as a child. Left Kylie’s chest after a severe allergic reaction
“But it wasn’t until I was 16, when I tried a tanning booth for the first time, that I realized something was wrong. It was so painful, but I thought it was normal because I had never used one before.
“But when I got out, the redness of my skin started to show and then it began to peel off in pieces. After some tests, I was diagnosed with severe sun allergy.
It is also known as the “vampire illness”. This was the condition that people believed they had back in Dark Ages when they were accused of being Vampires.
People with EPP also feel tired and chronically anaemic. They are also more sensitive to light because they can’t see well in daylight. This is what added to the mythology of the vampire.
Kylie says she’ll teach daughter River, pictured smiling to the camera at home, that being unique is beautiful as she grows up
On the rare occasions Kylie and her daughter (left) go outside, the pair take precautions including wearing UV protective clothing and travelling in a car with specially tinted windows. Right, River and Kylie’s father Phillip
Kylie has been trying to raise awareness online about the condition and said that while most feedback was positive, she still receives bizarre comments by trolls who claim her quadruplets were a ‘product witchcraft’
Kylie, 41-year old married to Phillip (left), said she finds humor in the vampire comparison and jokes about it often with her family.
Kylie and River have slightly different sun allergies. Kylie gets sunburns when she is out in the sun, while River gets severe reactions from applying sunscreen or lotion.
She said that she had no idea River would be suffering from a sunburn after her birth. It is so rare. She was just a baby when someone put sunscreen on her without asking us.
“Then, as soon she went out into the sun, she began to swell up, breaking out in full body hives, and it blew her skin’s capillaries. River, who is photosensitive like me, has an allergic reaction to sunscreen called allergic contact dermatitis.
“Her allergy is even rarer and affects less than 1% of the population. It can cause a rash, itchy skin and blistering.
“This is different from me because it isn’t an allergy to sunscreen. However, it doesn’t seem to work for me, which is common for people with EPP.
She and her daughter rarely venture outside so they wear UV protective clothing and travel in a tinted car.
Phillip, 41-year-old, is her husband. The mother said she finds humor in the vampire comparison and often jokes with her friends and family about it.
Kylie has been trying to raise awareness online about the condition and said that although most feedback was positive, she still receives bizarre comments by trolls who claim her condition is ‘demonic.
Kylie stated that she doesn’t let bullies get her down, and she’ll teach River that being different is beautiful as she grows.
“I have received some really dark comments from people, mostly religious group, about my sun allergy. She said that I have been called demonic and that my children, particularly the quadruplets of the family, are the result of witchcraft.
“People are crazy.” I was told that I am a child of Satan, because evil things live in darkness.
“I never let it get me down, I know people can be crazy. It’s funny how people can think like that.
“I tell my children that they are special and beautiful. River is such an amazing little girl, and I know she will do just fine.
“All I want is to educate people and raise awareness about sun allergies. Many people don’t even know they exist.” The more education and awareness we can spread the word, the better.