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The prevalence is approximately 6 in every 100,000 people, which is approximately the same as for motor neurone disease. Information from the PSP Society, we think there is probably about 10,000 people at any one time in the UK experiencing the condition. I think more people are aware of motor neurone disease, although it is very, very closely linked to progressive supranuclear palsy. However, there has been a lot of information and films made about motor neurone disease, so it has received a higher profile across the country. PSP affects people of all gender, ethnicity and background; however, there does seem that more men are affected. The first signs and symptoms come after the age of 40. We think people in their 60s, that is the most common time when we see people diagnosed with PSP, especially the 62, 63 age bracket. The condition is frequently misdiagnosed.

One of the issues for people with PSP is that it takes an awfully long time to get diagnosed. At present, there are no diagnostic tests. Usually, it is by taking a really detailed clinical history of the condition. So people are often misdiagnosed with MSA, stroke, Parkinson's before symptoms become more apparent, and then we have to review the clinical picture. Definitely, a lot of people are misdiagnosed for a long time, which can be years, maybe five years, they have been diagnosed with Parkinson's. People can be seen regularly in the Parkinson's clinics, and often you think, "Actually, is this Parkinson's?" You see symptoms that you would be expecting are not happening or other symptoms, which are very much signs and symptoms of PSP. The difficulty in judging the life expectancy of someone is that often when people first present with different signs and symptoms, a clear diagnosis is not made. We feel that the life expectancy could be five to seven years, but of course, this varies a great deal.