Living Life to the Fullest co-researcher Ruth Spurr has recently begun working with specialist talent agent, Zebedee Management. Below, we re-post Ruth’s blog, which she wrote for Zebedee this week to raise awareness of Ehlers-Danlos syndromes (EDS). Also check out Ruth’s brilliant blog, Ruth’s Bucket List.
I’m Ruth, I’m 23 years old and I live with #EhlersDanlosSyndrome. #EDS is a genetic connective tissue disorder that affects the collagen in our body. Over 90% of our bodies are made up with collagen so this isn’t much that’s not affected. I have always been unwell since a child but because it’s so hard to diagnose it took till I was 20 years old till I got a diagnosis. Everyone is different and it can be mild, severe or life threatening depending on your type of EDS and severity. I live with EDS Type 3, the #Hypermobility Type and a number of secondary conditions because of it including POTS, (Postural Orthostatic Tachychardia Syndrome which affects my heart and autonomic nervous system) and MCAD (Mast Cell Activation Disorder which is a immunological condition and causes inappropriate reactions to every day things from rashes to breathing problems). For me personally the EDS causes multi systemic problems and affects me causing chronic pain, fragile joints, bladder failure and intestinal mobility. I also suffer with infrequent breathing problems leading to #seizures and infections needing IV antibiotics and I have now fought sepsis (which is a very dangerous blood infection) six times which I know I’m very lucky to have survived.
Over the last four years my condition has deteriorated a lot and needing stabilising. I spent over 20 months in hospital including multiple stays in intensive care. There was a critical moment in March 2015 with my first arrest and stay in intensive care. Just under a week later when I was finally brought round from the coma and we were all on cloud nine that I had survived what I just had. One of the doctors said “it’s just amazing, you really shouldn’t have survived that but you did!” That was the start of my bucket list.
One of the main reasons was one of my best friends who I hadn’t spoke to in years came to see me at that time and when she realised I could have died it made everything else seem so small because in the end we only have one life and we should be living it to the full. That’s just what my list is about, living every moment and not putting things off, feel the fear and do it anyway.
‘Have fun, be happy and make a difference in your life as life is too short and too precious not to’.
Have fun, be happy and make a difference in your life as life is too short and too precious not to. I know that so well and I’m doing my best to live life and grasp every moment I can. I’m not able to work because of my condition but I do talks to children and young people on disability in my local area when I’m able play #wheelchairbasketball too. As well that I am also in the process of training my Dog Willow to become my assistance dog.
I love raising awareness for illness and #disability, showing the kids I talk to that anything is possible and we should all be treated equally. So when I had the chance to be part of #teamzebedee I grabbed that with both hands and very happily said “yes!” I’ve often really struggled with the way I look and found it hard to see the beauty in all my scars and tubes. But over the last year especially I’ve learnt to love myself.
‘All I ever want to do is live my life to the full and make a difference where I can’.
This is who I am, illness and all but that isn’t all I am as I am so much more and I feel so honoured that Zebedee see that in me too. All I ever want to do is live my life to the full and make a difference where I can. If any child, young person or adult is reading this and has any kind of disability or illness please know that if I can do this so can you.
Your illness does not define who you are and you are just as beautiful despite any scars. Be proud of who you see in the mirror, we’re all individual for a reason. Together we can help raise awareness, change perceptions of disability and show the world that we’re here and we deserve to be heard and seen just like anyone else.
This blog post has been reblogged from https://www.zebedeemanagement.co.uk/blog/eds-awareness-month with Ruth Spurr’s permission. Thanks to Zebedee Management.