Amy Bell is allergic to sunlight – so how has she coped with this long hot summer?

ONE lunchtime, Amy Bell left her office and popped over to the shops for a sandwich. It was a sunny day and she'd only been outside a few minutes. But on her return, her arm turned lobster red, as did her chest.

"My skin felt very hot and itchy to the point of stinging and felt like little bugs were under the skin," said Amy, 32, from Sherburn-in-Elmet, near York.

She saw her GP who suspected Amy had a light sensitivity. Six months later after a series of tests at hospital, a consultant give her a proper diagnosis: solar urticaria – Amy was allergic to sunlight.

At first, Amy didn't quite know how to take the news. "When it first happened, I thought it was hilarious. Who's allergic to sunlight? It's ridiculous. And I didn't think it would last very long."

But seven years later, Amy is still allergic to sunlight and has had to adapt her life dramatically to cope.

And it's not just direct visible light she has to protect herself from: her skin also reacts to long wavelength ultraviolet light (UVA) and short wavelength ultraviolet light (UVB). It means, she needs to take care even when sitting by a window or driving in her car.

Amy has tried various medications and treatments to help ease the symptoms, which help to some degree.

But the main advice from doctors has been to keep out of the light, stay covered up and take shade when she goes outside.

In autumn and winter, that is fine – but in summer, it is difficult, especially this summer because of the heatwave.

Amy said: "This summer, I stayed in for three weeks, with the curtains closed. I even ordered milk online from Amazon Prime Now despite Aldi being only two doors down from me.

"It does get you down. I tell people I have SAD [seasonally affective disorder, or winter depression ] but the other way around: I get SAD in summer, others get it when it's not sunny."

Amy doesn't know precisely what caused the condition. "There could be a genetic disposition, which needs to be triggered by something such as stress or a virus."

Amy has had to make many changes to her life. "From a social point of view I have to be careful in restaurants and cafes. I can't sit by a window. If I go to weddings, I have to wear long dresses, a jacket and use a parasol.

"I can no longer go running outside, unless it is after dark or I wear lots of layers, which are uncomfortable."

Amy is a keen volleyball player and coach as well as team manager for the England Cadet girls. Luckily, most matches are played inside, but she has taken part in beach volleyball tournaments at Bridlington beach for the past two summers.

"I have to wear long sleeves, a cap, buff, leggings and even beach socks," she says. "I play for 20 minutes, then sit in the shade in a beach hut."

Finding the right clothes to wear in summer is tricky too: fabrics can't be too lightweight or see-through as light can penetrate. And it's hard, Amy says, to find fashionable items that offer protection outside of sports clothes. "I have a great collection of maxi dresses, cardigans, hats and scarves," says Amy.

In the early months of her condition, Amy ran the York 10k. "I wore a black UV cycling top, leggings, a cap and a buff. I was so hot that day and when I got home, I was very tired and I had a temperature that would not go down."

Afterwards, she was overcome with a deep fatigue, along with joint pain – which turned out to be symptoms of the allergy too. "You lose 50 per cent of your energy and part of your co-ordination. You feel woozy and groggy."

This fatigue is the worst part of the condition, says Amy. "It's hard not being able to do things."

At the time of her diagnosis, Amy worked as a communications specialist in West Yorkshire, then she moved to London. She worked full time, battling against the fatigue and trying to keep out of sunlight as best she could. Last year, she moved back to Yorkshire, with her partner Mike, and set up her own business, Hey Me! as a communications and marketing specialist. It's ideal, as she can work mostly from home, and plan according to the weather. If she has meetings in York or Leeds, it's only a short drive away. Video conferencing through Skype makes working remotely easier too, she adds.

The hardest part to deal with, she says, is acceptance. "For someone who was very active it has been a massive thing to go through."

And she says while the NHS has been brilliant at giving her various drugs and treatments to try to keep her symptoms under control, it has been less good at supporting her psychological needs. She said: "The main thing for people with skin conditions is that there are massive psychological repercussions and they are undervalued."

She added: "It really affects my mood, almost Jekyll and Hyde like. Sometimes, I can laugh it off, but there will be days when it will defeat me."

Most of us will lament the passing of our long, hot summer, but Amy is already celebrating the changing seasons. She said: "When it gets to autumn and winter, I feel like a new person."