Imagine you’re 28, developing your career, relationships, trying to get on the property ladder and starting to make your way in the world. Then you’re diagnosed with Multiple Sclerosis, the most widespread disabling neurological condition for young people around the world , for which there is currently no cure . That was me in 2008.
MS is an autoimmune disease of the central nervous system. The immune system becomes faulty and attacks healthy tissue in the brain and spine, eroding the protective covering of nerves and leaving them exposed and damaged. Nerve signals that enable the body to function are interrupted, causing a myriad of symptoms that can include vision loss, pain, muscle spasms, bladder/bowel issues, fatigue and mobility problems. People with MS have to live with a whole range of different symptoms. People are commonly diagnosed in their 20s and 30s, and around 100,000 people in the UK have the condition. I have the most common type of MS – the relapsing form, which is characterised by a relapse or “flare ups” that can last from a few days to several months. My symptoms have included loss of strength in my hands, numbness, muscle spasms and fatigue. You don’t know when a relapse will occur, how long it will last, how severe it will be, what bodily function it will affect and if there will be lasting damage. MS is a constant life of uncertainty.
But nine years from diagnosis I’ve turned MS into a positive life change. I’m a campaigner and advocate for people with the condition and have done some amazing things as a result.
However, it hasn’t always been easy and much of my advocacy and awareness-raising has been borne out of seeing gaps in services and support, something echoed by Sanofi Genzyme’s recent Missing Pieces report. The report shows that there’s still a serious lack of access to information and treatment for people with MS, even though the landscape has changed tremendously in the past decade, with more licensed therapies available and more services being developed. What is clear is that availability doesn’t necessarily mean accessibility.