Palindromic Rheumatism – if you have been diagnosed, Arthritis Research UK wants to hear from youApril 10, 2013 at 11:43 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 1 Comment
Here is a message I received from Jude at Arthritis Research UK. They’re looking for people who have been diagnosed with this rare form of arthritis, so if you have it, please fill in their survey (link below):
It seems good information about a rare form of arthritis called palindromic rheumatism is hard to come by, but I’m hoping some of your readers and bloggers can help put that right. I’m doing some work for the charity Arthritis Research UK, which wants to develop information materials to help people with palindromic rheumatism manage their condition. As a first step, we want to talk to people who have been diagnosed with the condition. It’s characterised by unpredictable flares of pain and swelling in joints, which return to normal between attacks, and can have life-changing implications. As you rightly say, everyone is different, and with so little research into palindromic rheumatism, we want to hear at first hand what it’s like to live with it, how it affects people and what their experiences of getting a diagnosis were. We’d like to invite anyone among your contributors and readers who has palindromic rheumatism to take part in a survey between April and July 2013. All they have to do is complete a short online questionnaire at http://www.arthritisresearchuk.org/palindromic. If they agree, we’ll then contact some by phone to hear their palindromic rheumatism story in more depth.
Meanwhile, thanks for the very positive blog about RA.