How do I share my story? Expand You can get in touch to discuss where to start or send you story in to [email protected] at any time.
Why is it important for Dystonia UK to have real life stories? Expand Dystonia UK aims to celebrate the incredible people that make up our community, hearing your stories helps us understand and champion our community even more.
How can sharing my story help? Expand Your stories can support other members of the community who might reach out to us, help us identify services in need of improvement, champion the unsung heroes, and are a part of creating a bigger impact in research studies, lobbying at a governmental level and awareness raising. Lots of people tell us that sharing their story can be a very cathartic experience and hugely empowering.
Where will you use my story? Expand To create the biggest impact we might use your story in lots of different places, including but not limited to: on our website in our 'Dystonia Matters' magazine as part of reports and campaigns in presentations and talks in our 'Dystonia Matters' podcast on our social media channels It's important to us that we treat your stories with respect, and we can also anonymise your personal account if you prefer.
What’s the best way to share my story? Expand You can share your story in lots of different ways: As a written account. As a video recording. As an audio recording. Whichever format you choose, we might contact you if we think it would be suitable for other formats too.
Should I send photos and in what format? Expand Yes please! We love to share photos with your story. Landscape orientation photos are preferred, if possible over 2MB.
What kind of information should I include? Expand It is an incredibly personal process so we will never tell you what to include or leave out. You can detail anything that’s important to you. Some people prefer to talk about their whole history or journey with dystonia, while others prefer to talk about a current challenge or success, you can be as detailed as you like.
Where do I start? Expand If you are thinking about sharing your story, the following prompts might be helpful to get you started: Personal details (name, age, occupation, interests) Dystonia details (type, age/year of diagnosis, treatment plan) Experiences What did it feel like when you were first diagnosed? What kinds of things help you live well with dystonia? Have there been any challenges or successes living with dystonia? Do you have any good or bad examples of services? How does it affect you and those around you? What advice would you have for someone else living with dystonia? Why does dystonia matter to you?