The idea was very simple – use Google Ads to advertise to anyone researching dystonia symptoms online. So if someone types in “twisted neck” or “dry eye” to Google, an advert will appear on the Google search page that takes the person through to our website. There they see a carefully worded page – we emphasise that any route to diagnosis has to be done in co-operation with GPs and specialist consultants. Thanks to a kind donation of AdWords advertising from Google we have been able to advertise widely. 

There are only around 2000 new cases of dystonia per year – so it is obvious that most people coming to the website in this way don’t have dystonia. Most people take a brief look at our site and move on. However, around 1 in 5 (25,000 per year) research in more detail – that is a huge amount of information getting to people who may have dystonia.

At first we heard very little as a result and wondered if this project was making a difference – but slowly we started to hear a trickle of stories from those who had been helped to a diagnosis. The trickle has grown into a steady flow and neurologists regularly tell us they’ve seen people who’ve come to them as a result of adverts. The chart below shows that increasing percentages of those signing up for our newsletters first found about dystonia online.

Chart 1


There are also signs that time to diagnosis is improving. As the chart below shows, those who were diagnosed in 2011/12 report waiting 3 years - down from a 4 year average in the previous decade (based on 116 people who were diagnosed in 2011/2 who signed up for the newsletter). This is promising but it is not yet certain whether it will develop into a trend.

chart 2

We will keep you posted about how things progress.