Health and wellbeing

Funding level: £10,001 to £25,000


Dystonia is a neurological movement disorder which affects more than 70,000 people in the UK. The condition occurs when the brain sends faulty signals to muscles and these lead to involuntary muscle spasms where the body is forced into twisting, repetitive movements and postures. The effects can be both painful and disabling, yet there is no cure. Dystonia affects children and adults, and can be profoundly disabling. Dystonia doesn’t just impact on someone’s physical abilities but also have a devastating effect on their quality of life:

“I had lost my job as my neck was now resting on my right shoulder and the pain was excruciating… I was very withdrawn and suicide had crossed my mind several times. I hated going out in public and still do as I feel like a freak”

The Dystonia Society has been helping those affected by dystonia for almost 35 years and was established by a group of people who were affected by the condition. We support those affect by this devastating condition whilst working to improve services and ultimately find a cure. One of the ways we do this is through our network of local support groups, connecting people living with the condition, their carers and anyone affected by the diagnosis. Dystonia isolates people and our groups provide a way for them to support each other, learn more about the condition and ways to manage their health on a daily basis.

Many people with dystonia are at first told it is ‘all in the mind’ meaning they often endure years of pain, isolation and misunderstanding. They may have been laughed at in the street, or accused of being drunk because of their uncontrollable body movements. Having the opportunity to attend a group where others understand your condition helps people to realise that they are not on their own.

“I get such a lot out of attending the Support group meetings…It's so good to share experiences with others, have a laugh and know that you're not alone”

These groups are run by volunteers usually living with the condition or caring for someone, so their available time and energy can be unpredictable and variable. With much needed extra funds we would be able to recruit a group co-ordinator to support the needs those groups locally and ensure that the volunteers have everything they need to deliver this much needed service.

People with dystonia tell us of the specific challenges they face living with their condition so this funding would enable us to run a programme each year with our groups providing guidance and support with these issues:

1. providing much needed support and training for carers who live with the daily challenge of supporting their loved ones with dystonia;

2. delivering self-management training enabling people to share and gain advice on how to they can manage the impact of dystonia on their everyday lives;

3. inviting guest speakers from leading medical and allied professionals providing an opportunity for people to increase their knowledge and ask questions about their condition in a supportive environment;

4. providing social and networking events to bring people together to share experience and support each other. These would be done on a local level but also on a regional level to share expertise, learning and support;

5. hosting an annual event for groups to come together to also share expertise, learning and support;

But we could do so much more. This extra funding would enable us to extend our group network to reach many others living across the UK with this disabling and isolating condition. We currently have 35 groups but would like to start more, as dystonia makes travel difficult and there are currently areas of the UK which have no group provision. We want to make sure our groups reach young people living with the condition, parents of children affected by dystonia and other harder to reach groups. Your support will help us to do that and to make a real difference today.

The Dystonia Society

Moment of Pride

Our local support groups are core to who we are as an organisation. People living with dystonia are the experts and we are very privileged to enable them to share their needs, meet new friends and support each other through these local networks. We know they make a real difference to lives today.

Location: Vauxhall, London, UK