A YOUNG man from Basingstoke has spoken out about his rare condition which prevents him from leaving the house without covering his entire body, in the hope of stopping people making hurtful remarks.

Jordan Fretwell was diagnosed with chronic actinic dermatitis in 2014 – a condition which means he is allergic to light.

Now, Jordan hopes to raise awareness about the allergy after suffering abuse when he goes out in public wearing a mask, which prevents his skin severely burning.

Even on a cloudy day Jordan can sunburn, and his skin is also allergic to some artificial light meaning there are few places other than his home where he can take off his protective masks.

The 22-year-old, who is also autistic, told the Gazette: “I feel like the whole world is against me and like I’m the only one who has this. I know I’m not but because it’s very rare it can feel like that. It knocks my self-confidence.”

Jordan is unable to go out on his own and even needs the windows in his home covered to protect him from UV rays.

When his mother Paula took him to a specialist hospital in London for tests, doctors sent them home with plastic film to stick on the car windows for fear he might burn during the journey back.

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Paula said: “They gave him light therapy and within six hours he had an horrendous reaction. It was so awful his skin was swollen and he was crying. They said he was severely allergic to light and even the slightest amount he will react to. It came on suddenly from nowhere.

“Within a second our life, his more than anyone’s, changed completely. We were told it was an extremely severe reaction and they took photos to show other doctors because they hadn’t seen a reaction that bad.”

Now, Jordan needs to wear two masks to protect his face, a hat and coat, even in the middle of the summer his skin needs to be completely covered.

He has to carry a light monitor with him, which must read zero for him to take his protection off, and he has to apply high factor sun cream every three hours when out of the house.

At home, his family had to install LED lighting and double filters on the windows.

It would take just 30 seconds of being exposed to light for Jordan to burn.

Despite best efforts to protect Jordan from light, sometimes he does still accidentally get burnt.

Paula said: “We have black windows in the car and a curtain to pull across and he still has to wear a mask. There are very few places he can go and take his mask off. He can’t sit anywhere near a window. If we aren’t somewhere with lighting that doesn’t hurt him and he wants to eat or drink we have to take him back to the car to crouch in the footwell to avoid the light while he takes his mask off, or put a cardigan over his head.”

However, rather than people being sympathetic to Jordan’s difficulties, he said the public can be extremely cruel, and he has experienced hurtful comments, despite wearing a badge explaining his condition.

“People mock him and with his autism and anxiety and being so hot all the time he has so much to deal with every day,” said 45-year-old Paula, who cares for him.

Basingstoke Gazette:

Jordan added: “It’s upsetting when people say things. One time I was at college and someone said ‘Middle East is that way’ because of the mask I was wearing. I went with my best friend when he had his hair cut and a man said ‘are you going to rob us’ and that upset me. I tried to keep my cool.

“I used to be more independent than I am now. It’s changed my life for not good reasons. It’s made things very restrictive.”

Paula wants people to stop abusing her son, saying: “People laughing and mocking is actually considered a hate crime and this is the impact it has on people. He often says ‘I shouldn’t go out’ and I hate him feeling that way because of the rudeness and ignorance of others, due to a medical condition he can’t help having.

“I just want more tolerance and acceptance and for him to be treated like a human being.”

Jordan has a 20 per cent chance of the allergy going, and is clinging on to hope this will happen so he can enjoy his life again and go on family holidays abroad, which came to an abrupt stop when he was diagnosed.

“I would love to do more activities outside like tennis or film-making. I used to really appreciate the outside,” he said.