Dystonia UK is a member of Dystonia Europe - an organisation that was formed in 1993 as the European Dystonia Federation — the European umbrella organisation for national dystonia groups.

An account from Dystonia UK Trustee, Tim Gannicliffe.

I attended Dystonia Europe's 2022 conference on behalf of the Dystonia UK, along with Dayna Ferdinandi, Dystonia UK’s Director of Fundraising and Communications. Set in a centrally located hotel in Copenhagen there were a number of speakers exploring various facets of dystonia.

The day started with a German professor of neurology, Prof. Tobias Bäumer, who gave a general introduction. Prof Bäumer talked about how dystonia is now classified as either isolated in other words dystonia only, combined i.e. present with other movement disorders, complex i.e. involving other features or conditions. Dystonia is now also seen as a network disorder, not just the basal ganglia, but involving the cerebellum as well.

After that Danish geneticist, Prof. Lena Hjermind, spoke on the genetics of dystonia. At the moment about 2% of dystonia patients have mutations associated with dystonia, however, of these patients only 15% to 30% will actually go on to develop the condition. The frequency of dystonia in the populations seems to vary wildly according to studies; 1.2 - 600 per 100,000. Part of the reason why there is such a large range is how dystonia is reported.

The frequency of dystonia in the populations seems to vary wildly according to studies; 1.2 - 600 per 100,000.

The next session was regarding deep brain stimulation (DBS) for dystonia. A number of factors can affect the efficacy of DBS: age, severity, length of disease, other conditions such as dementia. In a long-term study lasting at least 10 years, most participants only experienced a small decrease in efficacy of DBS or no decrease at all.

We heard from Dr Jean Pierre Lyn of the Evelina Hospital in London. Discussing dystonia in children. He emphasised the importance that a child is diagnosed correctly before the age of five. The main treatments used in children with dystonia are DBS or intrathecal Baclofen. He has recently developed guidelines for diagnosis and treatment and is now developing a predictive scale for clinical intervention that can be used by parents and carers to indicate that a child is not developing as they should to prompt assessment. For example, a child should be able to sit unsupported by the age of three.

Johanna Blom, a Swedish physiotherapist based in Malmo, spoke on the uses of physiotherapy in dystonia; they include activation and strengthening of corrective muscles, training of control and posture, reduction of tension and involuntary movement and relaxation. The physio has developed a programme of exercises for Cervical dystonia on a digital platform (Dystonia Physio Exercise Hub) for use at home and is due to be launched in the autumn of 2022. After assessment by a physio with access to the hub, a personalised programme can then be developed for the patient.

Lastly we had a presentation on living well given by a neuro psychiatrist Prof. Marjan Jahanshahi from the National Hospital in London. She shared her list of 25 points for well-being such as talking to friends and family, seeking help from medical professionals for psychological support if necessary and also exercise and other activities.

Overall, this was an informative day covering a broad range of topics. It was useful for us to be reunited with our sister charities across Europe and to come together collectively to reflect on what our communities need.

If you're interested in attending a similar in person event, join us at the largest community event for people living with dystonia in the UK, in the Summer of 2023, in the iconic city of Newcastle.

Published: 9th January 2023