Dystonia UK live on BBC Breakfast!

[@Mel-hl1bb]

I was so happy to see this on the news I've got cervical dystonia and it needs more recognition

[@The_Relaxation_Coach]

Ive got dystonia, thanks for raising awareness! Great news that you got the chance to tell people about it on BBC Breakfast

[@SuperShassa]

I've had vocal dystonia for over 40 years. I was 19 when I lost my voice. When it came back slightly, I saw a voice therapist who said it was adductor spastic dysphonia. I was diagnosed in my 30s as having a vocal dystonia. It's great that there is more awareness. I've muddled through as best as I can . Like the lady says you have good days and bad days. 🤔

[@HayzTeeArt]

Thankyou so much. I lived with dystonia for nearly 20 years without a diagnosis. Drs didn't know what it was, nor did anyone. Mine is in my neck, the right side. And it twists as turns, and eventually locks for a while Mine is particularly painful once the spasm hits a certain level of contortion / when it locks like that for a while Nice to see it being spoken about in the news alas. At least more people will be aware of it now

[@kinga777]

Thank you for making society aware of what dystonia is. I also have dystonia, unfortunately the treatment is not as easy as it seems, my body reacts very badly to injections, headaches, stronger muscle tension, so, unfortunately, managing symptomsps is not as easy as it may seem.

[@kevinjohnbetts]

General dystonia sufferer here (lifelong but wasn't diagnosed until I was 32). I remember seeing the clip on a blooper reel and whilst it wasn't funny I fully understood why Ben would have been unaware of the condition. There were things I wish could have been talked about (the psychological aspects of the condition, for example) but in a ten minute segment on a national news/magazine programme I appreciate the best anyone can do is give a broad overview. Thanks for putting this up - I missed it live and finding segments on iPlayer can be a pain in the rear end.

[@mandyiceton5298]

I was diagnosed with dystonia in May this year after having to pay to see a private neurologist due to a 10 month waiting list on the NHS I am still awaiting treatment, my head tremors are constant and I’ve had to have months of work because of this, Its a very painful condition and as totally changed my life I would give anything to be back to my normal self it’s absolutely exhausting, hopefully in the new year I will get some treatment.

[@paulsutton6430]

I have Dystonia Mandy ,it will calm down when you have the treatment but don't expect the movement to stop altogether, I had to wait 3 years for a diagnosis, so hang in there and iam sure you will feel better once you start the treatment, take care

[@Tag-e2t]

I've had cervical dystonia for 5 or 6 years and only recently diagnosed. I too was on the waiting for treatment on the NHS for 14 months which finally started last week and as yet have not seen any benefits of it. Really hope your appointment comes through soon and you can start the treatment too