Thank you to everyone who helped to raise awareness of dystonia during this year’s Dystonia Awareness Week. It was a fantastic week which saw many people learning about dystonia through our website and social media as well as through events across the country. Here’s some of the highlights of what happened during the week:
Thunderclap and Social Media
Thank you to everyone who joined our Thunderclap on Facebook and Twitter. The message went out on Wednesday 4th May and we had 189 supporters who got the message about dystonia out to 122,235 people!
Thank you also to everyone who liked, shared, retweeted and commented on our Dystonia Awareness Week posts on social media. Our Facebook and Twitter posts on the first day of Awareness Week (Saturday 30th April) reached almost 30,000 people!
Cakes, bakes and dressing green!
There were lots of cakes eaten during the week, all in the name of dystonia awareness! Carol Huntley held a Tea Party once again at Newcastle University and Amanda Brown organised a dress green day at Royal Mail in Glasgow once again raising £1,050. And in the London office, staff baked mini cakes to give away with leaflets in the foyer raising awareness amongst staff at the many organisations also in the building.
On the Thursday of Awareness Week we launched our Q+A video with Harbinder Sandhu from Warwick Medical School who answered questions about her research project on dystonia and non-motor symptoms related to dystonia. If you would like to see the video click here...
Roger Taylor of the Oxford Support Group arranged a colourful and informative dystonia display at Farringdon Library to raise awareness in his local area. Well done Roger!
Many people took a more active approach to raising awareness (and funds too!) during the week. Ian Bamford took part in a 100km cycle ride and Gill Jepson organised a very large team of walkers once again who took part in the Keswick2Barrow Walk and was joined this year by our CEO Guy Parckar.
By Josie Matthews
Word of Mouth! There’s nothing quite like it. So what better way to swap experiences about blepharospasm than getting together a UK-wide group of people affected.
And this is what happened at the recent National Blepharospasm Day, which took place on 21st November 2015. The event, the first of its kind, organised by the NIHR Biomedical Research Centre at Moorfields Eye Hospital and UCL Institute of Ophthalmology , offered a fantastic chance to meet other people with blepharospasm to exchange information and tips about coping with this condition. It was also comforting to know that we’re not alone.
But equally important, the day also offered an excellent opportunity to interact with the professional medics and clinicians who treat blepharospasm in a relaxed and pleasant atmosphere. I found it extremely useful – and reassuring - to talk to some of the medics present about the myectomy operation I am due to have in the New Year. Hospital appointments usually suffer from time constraints but here it was very different. There was lots of time for chatting. In fact it was positively encouraged.
Chaired by Daniel Ezra, Consultant Surgeon at Moorfields, the programme was designed not just to enable patients and medics to share experiences but to focus on actions aimed at improving diagnosis and treatment and to identify priority areas for research in partnership. To this end, there were presentations by, and discussions with, both a Patients’ Panel and a Panel of expert researchers and medical professionals.
Rea Mattocks who was instrumental in organising the Day from the patients’ perspective, shared her positive experiences of improving diagnosis, treatment and research into another rare eye condition called ‘Birdshot’ (for short), and Guy Parckar, CEO of the Dystonia Society, updated us on the charity’s pivotal work in providing support, advocacy and information for those with the condition.
The Patients who made up the Patients’ Panel were Alan Bates, Christine Clarke, Jane Shelley and Patricia McCullough. They passed on some incredible revelations and outlined how their condition was diagnosed, or in some cases how they went years without the correct diagnosis! All stressed how debilitating the condition can be. One person compared the condition to his heart disease. Whereas his heart disease was life threatening, surgery and medication has made normal living possible. In comparison, he described his blepharospasm as a ‘whole-life condition’ and arguably more life-changing, because it impacted on his and his family’s everyday life. I was particularly horrified to hear their stories of years of misdiagnosis. And such insights only serve to highlight the vital need for more information about the condition to be made available to GPs and opticians too and the general public.
I consider myself relatively lucky in that I was diagnosed quite quickly. Two years ago in fact. But then looking back I realise that even as a two year old I was blinking a lot and spoiling any wedding photos where I was a bridesmaid because I had my eyes closed! Twenty years later I was admonished for flashing my eyelids at a prospective employer who obviously misinterpreted my twitching eyes! And more recently I was thought to have fallen asleep at a meeting as my eyes were closed! So I’ve actually had it most of my life!
In conclusion what did the day bring to me? Basically hope for the future. Hope that by sharing our knowledge of the condition we will empower the medical professionals, the neurologists and the clinicians, including GPs and Opticians, to undertake more research with the ultimate objective of finding a cure, although this will of course take funding.
Next Steps following the Day
In order to maintain the momentum of the Day, I joined a small group of other people with blepharospasm who took part in the day - Alan Bates, Marc Surry and Stephen Worsfold – and who volunteered with Rea Mattocks to meet with Guy Parckar on 4 December last.
Our shared aim is to consider and work out how the Dystonia Society could further help patients and clinicians to work in partnership to do nothing less than transform diagnosis, treatment and research.
To this end, it is vital that the number of people with blepharospasm, the nature and impact of their condition, how it is diagnosed and the effectiveness of current treatment is more accurately known across the UK. We are therefore most grateful to Karen Bonstein of the NIHR Biomedical Research Centre for collating/analysing information about ‘Living with Blepharospasm’ from all of us who took part in our Day.
So please watch this space for further news!
The Dystonia Society responds to a BBC Scotland report into the ‘postcode lottery’ for Deep Brain Stimulation (DBS) treatment in Scotland.