The NRAS Blog

Friday 20 July 2012

Look to the sky for inspiration!

 

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

1 comment:

Anonymous said...

Deborah, I live in the U.S.A., and I'm an adtive Volunteer for the International Autoimmune Arthritis Movement. We advocate strongly for JRA/JIA and have wonderful initiatives each year in support of 'OUR' babies and children around the world.

It would be wonderful if you would be interested in partnering with us in support of 'OUR' kids. Please review our website at: www.IAAMovement.org and if you find yourself interested in working with us, please contact our Founder/CEO, Tiffany Westrich at: Tiffany@IAAMovement.org Tiffany will be more than happy to talk with you and send you additional information.

I look forward to your blogs and will be pleased to 'Share' on Facebook. If there is ever anything that I may do to support your advocacy, please never hesitate to email me.

God Bless,
AutoimmuneArthritis-Anthony