Mark Styles, patient

Mark Styles@NHS from 03/04/17 to 07/04/17

Twitter Handle: @MarkrStyles

Condition: Kennedy’s Disease (Spinal Bulbar Muscular Atrophy)

Hi, my name is Mark.  I am 49 years old and live with my wife Katy and cat Spike.  I was diagnosed with Kennedy’s Disease in 2010.  It is a rare, slowly progressing neuromuscular condition which affects my mobility, swallowing and breathing.  Since leaving full-time work I run my own consultancy as an economic data analyst.  I try really hard to swim regularly and my hobbies are classic cars, and watching and reading about historic motor racing.

Since I became disabled, my wife and I have become campaigners for the Motor Neurone Disease Association, who provide support for people living with Kennedy’s Disease.  We have spoken in parliament about our lived experience of disability, particularly the financial impact of it; we have emphasised the role of carers and the need for co-ordination of health and social services for people with complex needs.  We have been to a garden party at Buckingham Palace to represent the MND Association; we have been to 10 Downing Street to hand in a petition about the needs of people living with MND and their carers and even attended the London Premiere of the film, “The Theory of Everything,” about the life of Stephen and Jane Hawking.  I am a Patient and Public Voice representative on the NHS England Rare Disease Advisory Group.

I have seen at first hand the power of talking about my lived experience of a rare disease.  By providing first hand testimony I am able to provide some of the facts behind the statistics.  Daily life may be becoming slowly more difficult, but this does not stop me trying to create change and making something positive out of my situation.

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