Akshay's story

"The sleep was probably the worst part"

“I haven’t had a week of good sleep for years,” says Akshay, 17.

“Growing up, my eczema meant I couldn’t wear certain clothes, couldn’t go in the sea on holiday, simple things like that."

"I was always going to the doctor and as a child, that made me feel like something was wrong with me. Missing school didn’t make me feel good either. But the sleep – that’s probably been the worst part.”

"It got progressively worse"

His mum, Sheena, remembers how it all began.

“It started with a little itchy patch on his elbow when he was about three or four. But it got progressively worse every year. By around nine or ten, we were putting cream on up to eight times a day.”

"One in three nights, he wouldn't sleep"

The impact on Akshay’s sleep has been huge. “When I’m trying to sleep and I get itchy, that itch just spreads more and more. It causes me to get really hot, and then it’s a while before I can fall asleep,” says Akshay. “Sometimes I’d wake up in the middle of the night and start scratching and wouldn’t be able to get back to sleep for some time. When I was 10 or 11, it was most nights.”

Sheena adds, “One in three nights minimum, I’d go into his room and literally hold his arms down so he wouldn’t scratch himself. And he still wouldn’t sleep. That year, he must have gone into school late once every two weeks.”

"In class, it takes my attention away"

“In class, I can’t do anything to stop it,” Akshay says. “It just takes my attention away from whatever I’m learning and onto my skin. It’s not like I can put cream on during the lesson, so I just have to get through it.”

Regularly playing football and cricket also aggravates Akshay’s eczema. “He’d come back from a football match and his skin would be a mess and you’re back at square one – meaning another disrupted night,” explains Sheena. “If he wasn’t so passionate about sport, I think he would have stopped.”

Over time, the family built up an understanding of which treatments worked – and which didn’t. “We’ve tried endless creams and tried various diets. I’d go into the GP with a spreadsheet of everything we’d tried – every cream, every steroid, every moisturiser we were using.”

The impact on his mental health

Akshay reflects on the toll this has all had on his mental health. “Sometimes it just feels like too much,” he explains. “I’m fine with all the problems until a certain point – every few months I have to let it all out.”

Taking part in new research

The family were invited to join Professor Flohr’s ‘Mind and Skin’ study after visiting the Severe Eczema Clinic at Guy’s and St Thomas’s Hospital. As part of this, Akshay underwent cognitive tests, skin checks and sleep monitoring using advanced technology, including smart watches, electrodes and MRI scans.

“The research showed that my sleep was even more disrupted than I thought,” he says. “It was interesting. I know there’s no set answer to all of this, but I just wanted a guideline – a vague answer to how eczema is affecting me.”

"It’s a much bigger fight”

For Sheena, taking part was about helping others too. “I know how horrendous his sleep was. If there’s anything people can do to stop that happening to other children, then we wanted to help with it.”

Now, both hope to see a more widespread understanding of what severe eczema really means.

“It’s not just something that goes away after 10 minutes when you put cream on,” Akshay says. “It’s constantly having to keep your skin moisturised. It’s wearing clothes that make you feel uncomfortable. It’s having the capacity to keep experimenting with creams. It’s just a much bigger fight.”

Akshay's story and Carsten's research on eczema, sleep and mental health are featured in our latest impact report.