Dystonia is a neurological condition/illness/disability which cannot be cured, which affects 70,000 people across the UK any many more worldwide, and yet this is misdiagnosed or simply not picked up by many doctors.
Dystonia is caused by incorrect signals between the brain and the muscles, and can cause muscles to spasm, tremor, to lock in a fixed positions and can be very painful. It can affect people at any age, and can affect just one part of the body, or muscles all across the body. The impact of getting Dystonia can be massive and totally life-changing, but still awareness remains shockingly low.
I want Dystonia to be recognised and understood everywhere, starting with doctors or other healthcare professionals being able to recognise it and get people the diagnosis and treatment that they need.
To help make sure this happens I would like the Secretary of State for health, Jeremy Hunt, to tell the National Institute for clinical excellence (NICE) to produce a guideline about Dystonia, so that across the health system it can be recognised and the right treatment and support made available.
Already many people, including medics, have to "google" Dystonia to find out more about it. You can find out more here: www.dystonia.org.uk