I stopped at Costa this morning and bought my favourite cappuccino on the way to work to give me blog inspiration, then a Red Kite flew by...
Two months have gone by since I joined NRAS as the Juvenile Idiopathic Arthritis (JIA) Services Manager; my role is to evaluate the current situation of JIA services in the UK, with close collaboration with BSPAR - British Society for Paediatric and Adolescent Rheumatology. My journey has started and I am visiting those who are involved with providing, commissioning and using services in the field of JIA across the UK.
Most importantly I have been able to sit in clinics with patients listening to their stories about JIA. Yesterday I met a young boy of 12 diagnosed at the age of 18 months with Polyarticular Arthritis. He is petrified of injections so to try and relax him I started talking to him whilst he was playing on his DS. He told me he loved taking pictures of birds and as a keen photographer myself we started talking about Red Kites! I have had a fasination for them for the last seven years after working in a GP surgery in Cookham where from my office I saw about 20 of them in flying in the field opposite where they were nesting. I have nearly had many an accident on the motorway due to my adoration of them... I digress, the nurse was able to take blood from him. He was so brave.
It’s really difficult to tell the story of JIA and keep it quick – since how can you add all of the history, medication, treatments, pain, fears, and statistics into something brief? Never… I am just going to try to make something that will get people to think a minute. As all those with RA will understand, just because you can’t see something, doesn’t mean it isn’t there. Arthritis is not just an “old person’s disease,” children get arthritis too. If you have a JIA story to tell – I look forward to hearing from you!
Debs. dlarsen@nras.org.uk