Hello...
Becoming a patient advocate was never in my life plan. I mean you don't go to university and study for it, do you? But being diagnosed with multiple sclerosis in 2008 has not only led to a life full of volunteering and advocacy, but has also changed my career path and led me into becoming a patient engagement consultant. Not bad given how scared and uncertain I was of the future when I was first diagnosed!
My Story...
In around 2005, I lost the strength in both my hands. I was finding it difficult to write and grip, even cutting up my food. At the time it was put down to repetitive strain injury, I had some physiotherapy and in time it got better. Little did I know then that it was likely the start of my journey with multiple sclerosis (MS).
What does elephant skin feel like?
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This isn't a trick question! Fast-forward to 2007 and, after playing hockey one day, I felt a numb patch on my leg. Over about a week the patch spread to almost my entire left side. My skin felt thick like an elephant's and you could scratch me with a pin and I couldn't feel it. I was referred to a neurologist (a specialist doctor who is interested in the nervous system) and after about nine months, in which I'd experienced other sensory symptoms, had three MRI scans and a lumbar puncture (where they insert a needle in your spine to remove spinal fluid for testing) I was told I had relapsing MS.
What is MS? MS is an autoimmune condition. This is where the immune system (the body's natural defence system against viruses, bacteria and infection) becomes faulty (we don't know why) and starts to attack healthy tissue. In MS, it attacks tissue called myelin (pronounced my-e-lin) which surrounds nerve fibres. It's much like the plastic casing of an electrical wire. Well, the nerves are the body's messaging system between the brain and the rest of the body. So when they become damaged, they can cause a range of different symptoms, depending on where in the brain and spinal cord the "lesions" (damage) has occurred. Symptoms can include pain, sensory issues, mobility issues, fatigue, bladder/bowel issues and problems with memory, thinking and concentration.
Who gets MS? Typically, people start to develop symptoms in their 20s and 30s, and three times more women than men have MS. Globally, an estimated 2.9 million people have the condition. Initially, most people are diagnosed with relapsing MS, where we experience an acute attack of symptoms that gradually improve (or not) and may/may not leave lasting disability.
Falling into a black hole...
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I knew very little about MS when I was diagnosed. Nor did my family. And unfortunately I received very little signposting to support and information. We were in a black hole and the experience felt very disempowering. My family and I went through a very steep learning curve, at a time when we were still coming to terms with the diagnosis itself, navigating new medications and side effects, and facing negativity from others.
Inspired to make a difference
My experience and desire to create change ignited my interest in advocacy. I began by volunteering with various MS patient groups and charities, which evolved naturally into collaborating with other communities and stakeholders, including clinicians, medical publishers, digital health and pharmaceutical companies. Advocacy and patient engagement have become central to my life, and I am thankful that my MS diagnosis has led me on this journey. Find out more about my work by clicking below!
Symptoms over the years
I've experienced various symptoms over the years. Something that has been a permanent fixture is my fatigue. This isn't just ordinary tiredness, it's overwhelming and can be physical and mental fatigue. It's meant over the years I've had to adjust how I do things and what I do. For instance, how I work, exercise and socialise. Other symptoms have included bladder & bowel issues, the "MS Hug" (muscle spasms and pain in the little muscles in your rib cage), poor temperature regulation and Lhermitte's Sign (electric shock sensations when you flex your neck). MS can have an impact on so many aspects of your life so I've had to learn to adapt and know that it's OK to ask for help if I need it!
Contact
I'm always looking for new and exciting opportunities. Let's connect!