Hello, my name is Jonathan Hurley and I am Downs Syndrome.
About five or six years ago I got involved with the University of Cambridge on the 'Defeat Dementia in Downs Syndrome' project.
I joined this program because Downs Syndrome people can get dementia at quite an early age, mid-thirties onwards.
The studies that are being made are all about finding new information about dementia in Downs Syndrome, and finding new methods for showing signs of dementia, which will hopefully lead to finding early markers which can be used to treat and monitor treatments of dementia.
I first attended the Wolfson Brain Imaging Centre, which is based at Addenbrooke’s Hospital in Cambridge, I had a magnetic resonance imaging (MRI) scan lasting about one hour. This scan looks at the structure of the brain.
I then had a positron emission tomography scan (a PET scan), which took about two and a half hours. This scan maps the brain and shows if there is a substance called amyloid in it; this substance is associated with dementia.
I also had blood tests and a range of tests to assess my memory. All these tests were then repeated three years later and are still being evaluated to see what, if any, are the difference between the two.
I had a number of other studies done including a Mitochondria study to measure my energy levels and a DEXA scan which measures body fat and muscle content and gives a print out of what you look like on the inside.
I had an EEG study too, which used a cap to look at brain activity and played a range of noises and images to see how my brain interpreted the information and whether this was different from people who are not Downs Syndrome.
I also took part in an eye study, which looked at the retina for signs of dementia related changes.
I took part in all these studies because I hope they will help, not only myself, but all people who are born Downs Syndrome to have a more secure and healthy life.
I hope this gives all my peers confidence that we are not forgotten and people are thinking about us.