Imogen, 18, was diagnosed with Juvenile idiopathic arthritis (JIA) at age 8. Here she tells her story of how she found out about Your Rheum and shares her experience at her first group meeting.
How I found Your Rheum
I joined Your Rheum in November 2017 after finding out about it from CAPS (Childhood Arthritis Prospective Study). I am a CAPS participant and they send me study questionnaires regularly. Some questionnaires in CAPS ask about my future plans. I wrote about my A-level studies and my EPQ (Extended Project Qualification), which was about rheumatoid arthritis and the treatments available to patients with the condition. In these questionnaires I also expressed my personal interest in the condition, due to my ongoing struggle with more regular arthritis flare ups in new joints. To my surprise, the study coordinator for CAPS sent me an email offering some help with my dissertation and also informing me about Your Rheum. I was linked through to the website where I filled out an application form and sent it to a lovely lady who I later learned was called Katharine. From here I was sent an induction pack via email and invited to join the Facebook group. Initially I was a little worried that my condition being classified as JIA, was going to set me apart from other young people with different diagnosis of rheumatoid arthritis. However, the group is so inclusive and open to anyone with a rheumatic condition.
My first meeting
Almost immediately after joining, I was invited to a Your Rheum meeting in Sheffield on a Saturday afternoon, in a conference room at Sheffield Hallam University. The cost of public transport was an immediate concern to me but as I kept reading the email, Katharine explained that my train tickets would be paid for! As well as this I was offered a LoveToShop voucher (which I may or may not have ACCIDENTALLY spent in Sheffield that same day!). I found Your Rheum to be a friendly and warm group of other individuals with stories similar to mine.
Before the meeting started properly, we were all introduced to each other and the Your Rheum team and ate some buffet food which was all laid out for us. The whole atmosphere at the meeting was very informal and I felt very free to leave, which really made me feel comfortable, since I struggle a lot with the anxiety of being trapped in formal situations. We were introduced to two researchers/consultant rheumatologists, Dan and Rachel, (Rachel is also chair of BANNAR (Barbara Ansell National Network for Adolescent Rheumatology), an organisation that I later learnt funds Your Rheum).
During the meeting we talked about two research projects, the first one was about psychosocial factors and transition. Dan explained the research proposal and asked us what we thought of it – such as, is it important to research psychosocial factors, what do you think of the study design e.g. how often we send out questionnaires, or conduct interviews and do the questions make sense. We also talked about our own experiences with transitioning from child to adult rheumatology services and how we felt during the move. It was incredibly interesting to hear how my encounter contrasted with how easy other people found the switch and it made me realise just how much support services across the UK differ and what is available. The second topic we covered was about how we could treat JIA more effectively using a different system of treatments. This proposed study was especially helpful for my EPQ and allowed me to gain insight into all the hard work that goes into proposing a study.
My trip to Sheffield was very informative and also resulted in me falling in love with the city and picking it as one of my choices for when I go to university to study Biomedical Science in September of this year.
I’ve been a member of Your Rheum for over half a year now and I enjoy voicing my opinions on research proposals and helping with the design of promotion posters for Your Rheum. I’m looking forward to the next meeting which will hopefully be soon!