A rare inflammatory condition that causes excruciating, life-changing bouts of pain is being investigated by leading medical charity Arthritis Research UK – and it needs help from people who have been diagnosed with the disease.
The charity aims to find out more about palindromic rheumatism, a rare form of arthritis which is characterised by the onset of unpredictable attacks during which joints quickly become inflamed, often severely, and then return to normal.
Arthritis Research UK Medical Director, Professor Alan Silman, explains:
“Palindromic rheumatism is a rare form of arthritis, but its symptoms can be severely debilitating. Little is currently known about the condition, but between thirty and forty per cent of patients go on to develop rheumatoid arthritis.
However we do know that it can be difficult to detect, diagnose and treat as joints return to normal between flares, unlike other conditions such as osteoarthritis or rheumatoid arthritis.
We also know that at the moment there is very little accurate, authoritative information to help people who have the condition to manage it. We hope to begin to address this problem with a three-year programme of work, starting with a detailed survey among people who have already received a diagnosis of palindromic rheumatism.”
Anna-Marie Jones, Regional Fundraising Manager at Arthritis Research UK, knows only too well how devastating palindromic rheumatism can be. Her life was turned upside down when she suddenly and inexplicably developed agonising joint pains in her early 30s. Because her symptoms fluctuated, and because little is currently known about palindromic rheumatism, her GP at the time struggled to find a diagnosis. Meanwhile, Anna-Marie was forced to give up the full-time job she loved with the Crown Prosecution Service and the pain even meant she was unable to hold her newborn baby.
“It was an awful, intensely worrying time. No one understood what I was going through, and because the pain was sporadic I was even beginning to doubt myself. As well as the severe pain and swelling I was desperately fatigued.
“But I’m a little fighter and after eighteen months I finally received a diagnosis from a rheumatologist. After ten years working together we’ve also found the correct drug treatment to give me back my life.”
Now a busy mum working full-time for Arthritis Research UK, Anna-Marie still has to pace herself to keep her condition in check and finds the rarity of her condition can make it difficult for people to understand its severity.
“People don’t understand I’m ill because in between flares I look very well. I would urge anyone diagnosed with palindromic rheumatism to take our survey. I know what it’s like when no one understands, and this work will shine a much-needed light on the disease.”
Anyone who has been diagnosed with palindromic rheumatism is being invited to complete an online questionnaire and take part in a more in-depth interview by phone.