If I was to tell you that one in ten people had a disability which couldn't be physically seen, but that often prevented them from working - how would you feel?
How about an unseen disability that stopped them having a normal social life, enjoying leisure activities such as reading, going to the cinema or listening to music?
And if I added that the very same unseen illness had even led some people to suicide, but that doctors often told patients that nothing could be done - would you be surprised, sympathetic or outraged?
I was outraged.
Tinnitus affects at least one in ten adults. That's over six million people in the UK!
The condition is incurable and causes a person to hear hissing, buzzing or ringing in their ears and head. It is caused most often by hearing loss. Deaf people with no hearing can have tinnitus. People who do not notice they have hearing loss can have tinnitus. No-one I have ever met wants to keep their tinnitus, and yet medically the common approach is to say that nothing can be done.
Although tinnitus appears as a noise, it is a phantom noise produced by the hearing part of the brain, called the auditory cortex. There have been many conflicting theories about tinnitus, and there are other contributory factors which may cause the hearing damage but it is always hearing damage which leads to the tinnitus.
I have had tinnitus since my late twenties, probably brought on by hearing loss which occurred during my time in the army. Luckily for me, my tinnitus is mild and although it flares up from time to time, I have learnt largely to ignore it and do not yet need to seek treatment.
So, from personal experience I knew that it was a horrible condition to live with. When a friend mentioned he had found a medical device which helped people with tinnitus I agreed to start a business focusing just on the condition. I left my top job as Director of Fundraising and Marketing at the Alzheimer's Society and started The Tinnitus Clinic in Harley Street.
Right from the start I only provided treatments which had a scientific evidence base and employed audiologists who were as frustrated as I was about sending people home with tinnitus without any help or treatment.
People with tinnitus are often older and less willing to complain or shout about their sense of frustration with their health.
But over the years since I started the business I have seen more and more younger people with tinnitus - loud rock gigs, pubs and clubs and 24/7 personal entertainment delivered straight in to the ear by ear-bud headphone are all taking their toll.
I want three things to help people with tinnitus be better understood and have a better quality of life:
1. Education for GPs about what to say at that all important first appointment with a patient who has tinnitus.
2. A public health campaign about prevention of tinnitus which would also educate people about the condition and why it is so hard to live with.
3. Better treatments for people with tinnitus. In the long run, this would save the NHS money as patients wouldn't keep coming back time and again to GPs and ENT departments
People with tinnitus should not accept that there is nothing to be done.
And if people with tinnitus can't speak up for themselves then we must speak up for them.
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