Mother reveals seven-year-old daughter inherited severe sun allergy

母と娘, 7, who both have ‘vampire diseasethat makes them allergic to sunlight reveal family is bullied by religious groups who say their condition is ‘demonic

  • Kylie Szafranski, 30, from Phoenix, アリゾナ, diagnosed with EPP at the age of 16
  • Erythropoietic Protoporphyria causes the skin to be oversensitive to UV light
  • River, セブン, inherited the condition and is forced to protect herself in sunlight
  • Mother revealed she’s trolled on social media where she’s called ‘demonic
  • 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, 30, from Phoenix, アリゾナ, was diagnosed with Erythropoietic Protoporphyria (EPP) – a rare genetic condition that causes the skin to be oversensitive to UV lightafter suffering severe burns from a sunbed aged 16.

    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.

    状態, known as the ‘vampire disease’, is believed to be where the myth of the monsters stemmed from centuries ago, because people who suffer the condition avoid the sunlight and are usually very pale due to chronic anaemia.

    Kylie Szafranski, 30, from Phoenix, アリゾナ, and her seven-year-old daughter River both have Erythropoietic Protoporphyria (EPP) - a rare genetic condition that causes the skin to be oversensitive to UV light

    Kylie Szafranski, 30, from Phoenix, アリゾナ, and her seven-year-old daughter River both have Erythropoietic Protoporphyria (EPP) – a rare genetic condition that causes the skin to be oversensitive to UV light

    River is photosensitive but also has an allergic reaction to sunscreen known as allergic contact dermatitis. 写真, her back breaking out into a rash

    River's face is pictured after suffering a severe allergic reaction to sunlight

    River is photosensitive but also has an allergic reaction to sunscreen known as allergic contact dermatitis. Her back and face are pictured after suffering a severe allergic reaction to sunlight

    カイリー, pictured with her husband and three-year-old quadruplets Theo, ギデオン, Damon and Emery, says she's received nasty comments online due to her condition

    カイリー, pictured with her husband and three-year-old quadruplets Theo, ギデオン, Damon and Emery, says she’s received nasty comments online due to her condition

    ‘I have received some really dark things from people, mostly religious groups, about my sun allergy’, said Kylie.

    ‘I’ve been called demonic and have been told my kids, especially the quadruplets, are the product of witchcraft’, 彼女は言いました.

    カイリー, who is also mother to three-year-old Theo, ギデオン, Damon and Emery, first became aware of her allergy at 16 when her skin became severely burned and started ‘peeling off in chunksafter going on a tanning bed.

    ‘Looking back at my childhood, it was incredibly obvious I had severe sun issues that were never addressed.

    River's allergy is even rarer than her mother's affecting less than 1 人口のパーセント. She is pictured after having a reaction on her face

    It may involve a rash, itchy skin, swelling and blistering (写真)

    River’s allergy is even rarer than her mother’s affecting less than 1 人口のパーセント. It may involve a rash, itchy skin, swelling and blistering, pictured L-R

    Symptoms of the genetic disorder usually start with tingling, itching or burning, as well as redness and burning. 写真, River's bad reaction to the sun on her legs

    Symptoms of the genetic disorder usually start with tingling, itching or burning, as well as redness and burning. 写真, 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. 写真, Kylie's chest after a severe allergic reaction

    River's stomach after suffering a severe allergic reaction

    Kylie became aware of her allergy at 16 when her skin became severely burned and started ‘peeling off in chunksafter going on a tanning bed . She discovered River’s allergy (pictured right on her stomach) when she broke out into hives as a baby. 左, 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 realised something was wrong. It was so painful, but as I had never used one before I thought that was normal.

    ‘But when I got out, I saw how red my skin was and then it began peeling off in chunks. I went to see a doctor, and after some tests we discovered I had a severe sun allergy that is caused by a gene mutation.

    ‘It is also known as the ‘vampire disease’. Back in the Dark Ages, that is the condition that they believed people had who were accused of being vampires.

    ‘People with EPP are also chronically anaemic, which makes them feel very tired. They also look very pale with increased photosensitivity because they can’t come out in the daylight. This added to the myth 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

    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  go outside, the pair take precautions including wearing UV protective clothing

    写真, Kylie and her husband Philip

    On the rare occasions Kylie and her daughter (左) 外に出なさい, the pair take precautions including wearing UV protective clothing and travelling in a car with specially tinted windows. 正しい, Kylie and River’s father Phillip

    Kylie has been working to raise awareness of the condition online and said that while most feedback was supportive, she receives bizarre comments from trolls who say her quadruplets are the 'product of witchcraft'

    Kylie has been working to raise awareness of the condition online and said that while most feedback was supportive, she receives bizarre comments from trolls who say her quadruplets are the ‘product of witchcraft

    カイリー, who is married to Phillip, 41, (左) said she finds humour in the vampire comparison often jokes about the condition with her family and friends

    カイリー, who is married to Phillip, 41, (左) said she finds humour in the vampire comparison often jokes about the condition with her family and friends

    Kylie and her daughter suffer from slightly different sun allergieswhile Kylie’s occurs whenever she goes out in the sun, River gets a more severe reaction just from applying sunscreen or lotion.

    彼女は言いました: ‘When my daughter River was born, I had no idea she would have a sunlight allergy too because it’s so rare. Someone put sunscreen on her when she was 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 lead to increased sensitivity to sunlight.

    Symptoms start with tingling, itching or burning, as well as redness and burning.

    These usually occur within minutes of being exposed to sunlight and may take days to resolve.

    まれに, EPP sufferers can develop liver disease.

    EPP is inherited, しかしながら, many families are unaware they carry a gene for the condition.

    治療法はありません.

    Treatment largely focuses on avoiding sunlight.

    ソース: British Skin Foundation

    広告

    ‘Then as soon as she got into the sun she swelled up, broke out in full body hives and it blew the capillaries in her skin. River is photosensitive like myself but has an allergic reaction to sunscreen known as allergic contact dermatitis.

    ‘Her allergy is even rarer, affecting less than 1 人口のパーセント. It may involve a rash, itchy skin, swelling and blistering.

    ‘This is different from me because I am not allergic to sunscreen, though it doesn’t work for me which is not uncommon for people with EPP.

    On the rare occasions she and her daughter go outside, the pair take precautions including wearing UV protective clothing and travelling in a car with specially tinted windows.

    母, who is married to Phillip, 41, said she finds humour in the vampire comparison often jokes about the condition with her family and friends.

    Kylie has been working to raise awareness of the condition online and said that while most feedback was supportive, she receives bizarre comments from trolls who say her condition is ‘demonic’.

    But Kylie said she never lets get the bullies get her down and she’ll teach daughter River that being unique is beautiful as she grows up.

    ‘I have received some really dark things from people, mostly religious groups, about my sun allergy. I’ve been called demonic and have been told my kids, especially the quadruplets, are the product of witchcraft’, 彼女は言いました.

    ‘People are crazy. I’ve been told I’m 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 quite funny that people can think that way.

    ‘I always tell all my kids they’re special and beautiful. River is such a strong little girl and I know she will be just fine.

    ‘All I want to do is raise awareness and educate people about the reality of sun allergies because lots of people don’t think they even exist. The more education and awareness we can get out there the better.

    コメントは締め切りました.