I'm inspired by the little ones, whose futures are everything.
In the last 24 hours I have recalled my life as a child with Arthritis. As you may have read on this site, I was diagnosed with Juvenile Rheumatoid Arthritis when I was 4 years old. 20 years later I sometimes look for online support and find myself scouring the internet for appropriate advice for my age group and sometimes leave feeling a little confused, despite my knowledge and experience. How must it feel for a parent with a child who has just been diagnosed with a medical condition that they know nothing about?
Yesterday I was contacted by a lady whose son is 8 years old and was diagnosed with Rheumatoid Arthritis earlier this year after months of a non-resolving ankle injury. She spoke to me about her struggles with understanding all the medical terms and explaining things to family members, the physical and psychological feelings associated with having an unwell child and the difficulty in helping her son to understand his disease and still be able to function as a 'normal' child.
This conversation brought back so many memories of how I felt as a child, what it was like to try and tell my friends why I couldn't do P.E. that day or take part in the trampolining birthday party. My first memory of feeling embarrassment was when I was pushed to school in a wheelchair because I couldn't make the walk up the road to my primary school and I felt everyone was looking at me and judging me. I was 6 years old. It is so much easier as an adult to be forthcoming and have the insight that if someone judges you negatively then it doesn't matter. Trying to be a child but think in a much more mature way due to a disease is so difficult, and I think it's why my family say I have always been an old woman in a young person's body!
20 years ago there was no social media, no online communities and very limited support for children and families with RA. I have spent my morning looking online to see what is around now for children and although there is a lot for teenagers now, which is excellent, for under twelves there is still a very limited amount of information both online and in hardcopy form. Partly I think this is because there is a lot of restriction for children under 12 online (and rightly so) with no direct access to Facebook or Twitter, but I still spent a lot of time looking for child-friendly information that is easy to read and came away rather empty handed.
With this in mind, I feel quite passionate about creating another part to my website in order for children with Arthritis or other chronic diseases to learn about medicine and some medical terms, find some activities of fun things to do and also give them disease-friendly activities to do with their families. The little boy who has sparked my enthusiasm for this has suggested to me that I come up with more recipes that children can make and find appealing but will still be healthy and not worsen his symptoms. I have already recruited two very keen and talented young bakers whose wonderful mum is a friend, colleague and recent RA patient, so I hope to get some delicious recipes up soon!
I am going to really get my thoughts in order and hope to come up with some very exciting ways to help children and their families. I would love to know from all of you what you think could be interesting to children aged roughly between 5-12 years, topics that I could write about from the point of view of someone that has been in their shoes, but also someone who is a doctor and can hopefully explain a few things and dispel the misconceptions of us and our hospitals!
Please email me, message me through Facebook, or comment below with any suggestions that you have.
Thank you for your continued support,