Dystonia UK feature on BBC Breakfast!

In mid-December, Dystonia UK's Director of Fundraising and Communications, Dayna Ferdinandi, sat down on the famous BBC Breakfast sofa with presenters Ben Boulos and Sarah Campbell to raise awareness about dystonia on a national level.

Rewind to 2023! Ben was discussing 'shrinkflation' in a BBC Breakfast segment and interviewed a retail analyst called Teresa via video. Ben told viewers:

Whenever we talk about this on Money and Work it really winds people up because they’re just not getting as much for their money.’

Teresa was seen shaking her head as the camera cut to her, and Ben said: ‘You’re shaking your head Teresa, you can’t believe it either.’ Teresa replied: “No I’m shaking my head because I’ve got dystonia so don’t worry.”

As Ben quickly apologised, Teresa insisted: ‘No, no, no that’s alright. I’m quite open about it but people think I disagree with them.’

Having never heard of dystonia, Ben wanted to use his platform to highlight the condition and the lack of awareness surrounding it and thought that BBC Breakfast could really help.

Back to the present day as Ben made good on his idea and during a BBC Breakfast segment showed a film featuring retail analyst, Teresa, in person this time, who discussed the challenges faced by those living with dystonia and how positive her previous interaction with Ben had been in raising all important awareness about dystonia. Teresa was accompanied in the clip by her neurologist Professor Kailash Bhatia, who talked about the causes of the condition and how botulinum toxin injections can be used as a treatment option.

After the film, Ben and Sarah went on to interview Dayna. She spoke about how knowledge of dystonia is limited among the general public and how difficult people living with the disorder find trying to explain it to others. She also spoke about complications people face when trying to get a diagnosis as well as triggers, treatments and ways to manage the condition. Finally, Dayna spoke about the role of Dystonia UK in supporting people living with dystonia and encouraging further research into the movement disorder.

We were thrilled to be invited to the studio to expand on our previous interview and share the challenges of living with dystonia and the lack of awareness to a national audience! You can catch the full segment below!

Huge thanks to Teresa for sharing her story. We are incredibly grateful to Ben Boulos and the BBC Breakfast team for this amazing opportunity and for being so open to taking what could have been seen as a negative exchange and making it into a positive learning and awareness growing opportunity!