Read: Guardian article on Usher syndrome – “Don’t define me by a condition I happen to have”

Check out the Guardian’s article, written by our Editor Charlie Swinbourne and featuring Nick Sturley, by clicking here:

Extract:

Nick Sturley still recalls the train journey home from a hospital visit in London when he was 10 years old. His mother sat opposite him, reassuring him that she was fine, but even at that age he was a master at reading visual cues, and he could tell that something was wrong.

At the hospital, Sturley had been given eye drops and a range of tests. Afterwards, he sat in an office while his mother talked to the doctor. Being deaf, he had no idea what they were saying, and it was only later, through letters between home and his boarding school, that his mother explained that he had “tunnel vision”. He says that when he was “diagnosed as profoundly deaf when I was 10 months old [it] was a bad enough shock for my parents, but to be told I would also go blind was devastating”.

Sturley had been diagnosed with Usher syndrome, a genetic condition that affects hearing, vision and balance. Usually, the hearing loss is there from birth. The discovery of a gradual reduction in vision – people notice that they are finding it harder to see at night and that their peripheral vision is narrowing – often comes much later.

There is a debate that most people who are deaf or blind encounter at some stage – which is easier to deal with?

Click here to read the rest of the article: http://www.theguardian.com/lifeandstyle/2014/may/11/usher-syndrome-hearing-and-sight-loss