Living with pyoderma gangrenosum and leg ulcers – Shaun’s story

Shaun, 53, is an electrician who’s currently based in Chipping Ongar, Essex where he lives in supported accommodation with his dog, Oscar. Shaun’s life changed dramatically when a suspected mosquito bite at work turned into something much more serious.

“I’m an electrician and mainly work overseas on Government and diplomatic buildings. At the beginning of 2019, I started a 6-month contract that took me to Dubai, India and Namibia. I picked up a mosquito bite in Namibia. It was really painful but I carried on working before heading to Thailand.”

“When I arrived in Thailand, it had got really bad. I’d had a leg ulcer before so I knew what one looked like and could see that that’s what my bite had turned into. I always carried compression stockings with me because of the previous leg ulcer. I put two of them on to try and stop this ulcer getting any bigger but it just kept growing until it had spread all across the back of my leg. I knew I had to get back to the UK straight away.”

When Shaun got back to the UK in June 2019, he immediately referred himself to a specialist leg ulcer clinic in London:

“I just sort of fell into the clinic reception and said ‘you’ve got to help me’. I’d been treated by them before for my previous leg ulcer. Normally they have a waiting list but they took one look at my leg and agreed to help me.”

It was while in treatment at the clinic that Shaun was diagnosed with suspected pyoderma gangrenosum – an inflammatory skin condition that can be triggered by an insect bite. By this point Shaun was on several different types of medication, including morphine and steroids, to manage the ulcer. He was unable to walk unaided and could no longer work. The impact on Shaun was all-consuming:

“I’m self-employed so there’s no sick pay. If I can’t work, I can’t afford to pay rent or bills. I’d gone from having a regular income to having to get by on less than £400 a month on Universal Credit. I ended up living on people’s sofas and eventually ended up living in my car. I was in so much pain that I could barely sleep. I can understand how people are pushed to the verge of suicide by these things.”

Shaun’s precarious living arrangements made it impossible for him to self-manage his ulcer and in the spring of 2020 he was admitted to hospital. It was during his three-week stay in hospital that things finally started to turn around for Shaun:

“The nurses found out that I was sofa surfing and they basically said to me ‘you’re not being discharged until we know you’ve got somewhere to stay’. One of them put me in touch with a housing association and within three days they’d found me temporary accommodation to move into. I had my own room and a bed to sleep in. I could start looking after myself again.”

Shortly afterwards, Shaun was offered longer-term accommodation at a community arts and residential centre in Ongar, Essex where he’s been living for the past few months:

“It’s brilliant. The staff are great and there’s a nice mix of people living here. There’s a lad who does the maintenance so I’m teaching him about the electrics and helping out a bit. I’m still going to the clinic twice a week but we’re looking to get that down to once a week because my leg is now healing. We’re also going to start reducing my medication.”

Shaun’s ambition is to get his mobility back and start working again. He wants people to understand just how bad a leg ulcer can be and to take their leg health much more seriously:

“I think people don’t realise the complexity of a leg ulcer. When you get an ulcer, all these other things start to go wrong on top of it. I’ve got problems with my lower back now because of the walking with a stick and I’ve put on weight because of the steroids. I can’t walk more than 200 metres without having to rest. It just spirals out of control.”

Need to know more?

Find out more about leg ulcers including what to look out for

Read more about pyoderma gangrenosum