Most allergies are inconvenient but, on the whole, can be managed day-to-day.
That’s a challenge for one family from Arizona, who have an unusual allergy that makes leaving the house extremely difficult.
Kylie Szafranski and her eldest daughter, River, suffer with a severe sunlight allergy, which means it’s practically impossible for them to leave the house without having a reaction.
The rare condition, known as Erythropoietic Protoporphyria (EPP), means Kylie and River have to go to extreme lengths to protect themselves, such as UV protective clothing and getting special tinting for their cars windows.
The mum-of-five first noticed she suffered with the condition after using a tanning bed at the age of 16. Afterwards, she experienced extreme pain and parts of her skin blistered and fell off.
Kylie spotted River had inherited her condition as a baby, when she broke out in hives following sunscreen application and sun exposure.
The 29-year-old said: ‘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. 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 Kylie, her but also has an allergy to sunscreen known as ‘allergic contact dermatitis.’
Kylie said: ‘Her allergy is even rarer, affecting less than 1 per cent of the population. 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.’
The allergy is also known as the ‘vampire disease’ and is believed to be where the myth of vampires stemmed from centuries ago. This is because people who suffer with the condition avoid the sunlight and are usually very pale due to chronic anaemia.
Kylie’s family find humour in this vampire comparison and joke with their family and friends about it.
However, she has experienced abuse, too, with some people saying the sunlight allergy stems from her being ‘demonic.’
Kylie is determined not to let negative comments get her down and plans to explain to her daughter that their uniqueness sets them apart from others.
She adds: ‘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.’
Do you have a story to share?
Get in touch at [email protected].
Source: Read Full Article