@NHS from 30/07/18 to 03/08/18
Condition: Marfan Syndrome
Place of treatment: Great Ormond Street Hospital (GOSH), Royal National Orthopaedic Hospital and St Barts are the main hospitals I’ve been treated at throughout my life.
My name is Shona and I was born with a genetic connective tissue disorder called Marfan Syndrome. For the majority of my life Marfan didn’t cause me any problems, other than joint pain and hypermobility. I was constantly monitored, mostly by Great Ormond Street to watch for any cardiac problems and then when I was about 13 I was diagnosed with my first secondary condition, Scoliosis. Since then I’ve had 3 surgeries, including spinal fusion and a total hip replacement, and have been diagnosed with a long list of other conditions that together have resulted in me using a powered wheelchair to get around.
Whilst all of this was going on I was writing a blog and when it came to my first surgery I really struggled to find the answers to my questions about what to expect so I decided to ask my Mum to keep a diary of my time in hospital, to hopefully provide fellow patients with the answers to their questions. From then on I documented my journey with my health, diagnoses and surgeries to help support others and raise awareness.
I also talk a lot about disability and the problems I experience as a disabled person like accessibility and ableism and I volunteer my time to the British Heart Foundation and the Hypermobility Syndromes Association. Volunteering and writing my blog, and writing for other websites and publications, really gives me a feeling of purpose and my blog has been key in me getting through the past few years as my health has deteriorated. Outside of all that I love musicals, Doctor Who and writing!