Erik Møystad (49) is allergic to the sun.

While the rest of the family sits on the terrace facing the sun and barbecues, he has to stay indoors with the air conditioning on full.

If she is going to be outdoors, she should apply a generous amount of sunscreen and then cover her whole body with loose, thick clothing. He also had to wear sunglasses and a hat.

Everything to protect yourself from UV rays.

– As it is now, there is absolutely no hope, said Møystad, referring to the temperature outside the door at home in Elverum.

In a small inland town, the thermometer shows over 20 degrees. According to Yr, it was a full 30 degrees Friday afternoon.

It makes life in Møystad challenging.

Living in isolation

It all started when he was 18 years old.

Møystad, who was always active and loved spending time outdoors, suddenly developed a strange rash on his hands. The skin becomes red, blistered and swollen.

– Almost looks like a nettle rash, but I don’t understand what it is. When I’m out in the sun, it gets worse, says Møystad.

The rash, which is also very painful, moves from the hands, to the arms, to the face and head.

AC test: – Cools fast!

Møystad had heard that a solarium could help certain types of rashes, and decided to give it a try – after all, she’d done it several times before. After a few moments on the device, the rash returned – this time all over the body.

– I don’t remember anything from that time. It hurts a lot, he said.

In the end, he ended up in Ullevål. There, doctors discovered that he had a rare disease solar urticaria, also known as sunless nest. Just a few seconds in the sun can cause red, itchy and painful blisters on the skin.

– I feel that the whole world is falling to pieces, he said.

Møystad, who had just grown up, could no longer join the coast. While a group of friends are planning a trip to the South, he has to stay home. He had to quit his job, and that day turned his head upside down.

At night the sun is not so much.

– Previously, I always swam from early spring to late autumn. I always wear shorts and never get sunburned. I miss that, he said.

Møystad has a 12 year old daughter. The feeling of not meeting the standards of a father is very difficult. Roommates have to take care of most of the outdoor activities and play.

– I have a bad conscience about that. It hurts the least to not be able to teach my daughter to swim, she says.

He still didn’t know why he was sick.

– I just have to do my best, even if it’s hard.

Trond lame: – I feel obligated

– Experiencing a decrease in quality of life

Kristine Bø is a senior physician in the Department of Dermatology at the University Hospital Oslo (OUS), and has had Møystad as a patient.

He could not comment directly on Møystad’s illness, but told Dagbladet that the disease he had, solar urticaria, was a rare condition.

– The cause of solar urticaria is unknown. It’s an immune reaction that occurs in the skin, but the disease mechanisms themselves are largely unknown, he said.

The senior doctor also points out that the term “UV allergy” is a bit misleading, because you can also react to visible light which contains longer wavelengths than UV light.

– In very rare cases, patients with solar urticaria can have hypersensitivity to fluorescent tubes, he said.

According to Bø, the disease can develop in varying degrees of severity. Moderate complaints can be treated with antihistamines, namely allergy tablets that must be taken every day. There are also those who benefit from light treatment at a dermatologist.

Those with severe solar urticaria should undergo immunomodulatory treatment. For this, antihistamines are useless, and they also do not tolerate light medications either. Bø says that people with severe conditions often experience a significant reduction in quality of life.

– There have been cases where patients reacted to very low doses of light, for example after a short stay outdoors even in winter, he said.

– This is very impractical and seriously affects everyday life, he added.

Last fall, Møystad underwent a new investigation at the Rikshospitalet. He then performs a test, in which artificial UV light is exposed to the skin to test its sensitivity.

– I still have the score from that test, he said.

On Møystad’s upper arm, the square where the light hit the skin during the test is still visible.

– It is good to have it in writing and documented by a specialist. At the same time, it doesn’t mean anything, because it doesn’t change the situation. I don’t get any more help, even if I want it, he says.

Gusts of wind and cold: – No sunscreen needed

– Lots of chaos and chaos

Møystad has disability benefits, because in addition to UV allergies, she also struggles with ADHD and ME fatigue syndrome. The head wants mass, but the body can’t keep up.

He only received an ADHD diagnosis in adulthood.

– There will be a lot of chaos and chaos. ME, ADHD, and UV allergies are the gift packages of frustration and hard work, he says.

On good days, he likes to spend time outside when the weather permits. He has a nook in the woods that he really likes, which provides shade and protection, as well as access to nature and fresh air.

Sunscreen and sweat

– It’s been an extreme strain from day one, says Møystad.

This is very difficult financially. As a person with a disability, budgets are already tight, and UV allergies require several expensive and time-consuming measures in everyday life.

– A lot of money is spent on sunscreen, and clothes have to be changed more often than usual. They spoil quickly when they have to be washed frequently after being stained by sunscreen and sweat, he explains.

– I have been trying to get help financially for years, and neither information nor help was available, he continued.

He says that more sun protection, more living space or better assistive devices in the car can help his condition significantly.

– I’ve been told I have the wrong disease, and there’s no help or benefit for what I need. It felt so undignified, said Møystad.

It was only recently that Møystad found she was getting the support she needed from Nav. She’s got a new case manager, who has helped her apply for basic benefits to cover some of the biggest disease-related expenses.

– Damn it

Want to understand more

It has now been more than 30 years since Møystad was last able to move freely outside, and could feel the warm sun on his skin.

– I am used to. I know how to protect myself from the sun and such, even if it’s very tiring, he said.

Møystad calls for a better understanding of this disease both among public authorities and in the general public.

– It should not only be generally accepted ailments that you should turn to for support and help. Not everyone works the same way, so there needs to be more openness and understanding about it.