'I started a charity after misdiagnosis and stigma'

A man who has lived with psoriatic disease since childhood has founded a new charity to support fellow patients and hoped its work would be "bold and creative".

Joel Nelson from Hethersett, Norfolk, established Psoriatic Disease UK this year to help "bring together the community" of people who live with psoriatic arthritis.

"People don't talk about it. I went most of my life not sharing my condition, and was told I’d just grow out of it," said Mr Nelson.

Great British Bake Off contestant from Essex, James Hillery, who has spoken publicly about living with the condition, said the charity was "a godsend" for people "living in chronic pain".

Mr Hillery said his psoriatic arthritis, which is a skin and joint condition caused by the immune system attacking healthy tissue, "can flare up in pretty much any joint on any given day".

He said the peer support provided by the charity offered a "safe space to take off the mask and share how you are really feeling".

"Joel has built a great community that all really appreciate his advocacy efforts. It is rare to see male advocates who are so open and share the raw reality of living with invisible disabilities," he added.

Mr Nelson launched the charity along with his wife Anita.

"The impact on my wife is immense, so we wanted to include caregivers in this too.

"I maybe see my doctor once a year, if I'm lucky. The other 364 days, I'm relying on other people to support me with my chronic illness," said Mr Nelson.

Mr Nelson was diagnosed aged 12 with juvenile idiopathic arthritis, but said doctors took another decade to recognise his psoriasis.

"I was told I'd grow out of it. I would report rashes and I was just told it was thrush or poor hygiene, or being a teenage boy – all things that we now recognise as obvious stigmas.

"It wasn't until my mid-20s, when I was covered in psoriasis, that I was diagnosed. I was so poorly educated that I didn't recognise the blisters on my hands were the same condition as the rashes on my head or on my genitals.

"I was really embarrassed at university because I had one rash that was just below my beltline. As an 18-year-old young man, that's not a place you want to have rashes or be having conversations about."

Mr Nelson hoped that Psoriatic Disease UK could give others "a voice and space to share their experiences, and help them get through to the next time they see their medical professional".

"I think there is a 70-week wait to see a dermatologist in Norfolk," he said.

The focus of the charity was on "being creative and offering peer support spaces where they haven't been traditionally", such as YouTube and social media.

"Even though we've set out to be patient-led, we need to get everyone around the table. The charity wouldn't be here today if it wasn't for the support we've had from academics and medical professionals," Mr Nelson added.

A Department of Health and Social Care spokesperson said: "The NHS is broken and it is unacceptable that patients have been left waiting in pain and discomfort for more than a year to be referred for a dermatologist.

"We will tackle head-on the biggest issues gripping the NHS by delivering an extra 40,000 appointments every week and learning from good practice across the country, taking the best of the NHS to the rest of the NHS."

Follow Norfolk news on BBC Sounds, Facebook, Instagram and X.