Dystonia is a Neurological Movement Disorder in which your muscles contract involuntarily, causing repetitive or twisting movements. The condition can affect one part of your body (focal dystonia), two or more adjacent parts (segmental dystonia) or all parts of your body (Generalised Dystonia)

Dystonia is a very painful condition that can affect all ages and there is no cure.

It affects around 100,000 people across the UK including around 8,000 children, yet this is misdiagnosed or not picked up by many doctors. People go for years without a diagnosis being told it is in their head or anxiety if they have tremors.

The impact of getting Dystonia can be massive and totally life-changing, but still awareness remains low. 

I want Dystonia to be understood starting with doctors and 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 at the Department of Health, The Rt Hon Steve Barclay MP to ask 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, and patients themselves have to tell the medical staff how to treat them i.e in A&E or on general wards.

You can find out more here: www.dystonia.org.uk

I have started to raise awareness because of my own personal experience in health care settings.
I have mixed experiences of A&E sometimes a doctor has heard of Dystonia and the treatment is very good but most of the time they rely on you to tell them and ask what to give you to help, which obviously puts patients and staff in a vulnerable position.
After a recent stay in hospital,  I think as Dystonia is not that well known about we should all have a personal emergency treatment plan that staff can refer to in this situation, this is something I am pushing for as it was a very scary situation knowing what they needed to do but being unable to tell them because I couldn’t speak properly while having an attack. 

Please help me get things changed and raise awareness for medical staff! I would like nurses to be made aware during training even if this just makes more people aware and take the time to understand what it is I would be happy 

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