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Ive just been diagnosed and all I've been given is this website!
I share your frustration…
Im aware that many people who are first diagnosed with FND are just given this website address by a health professional, scribbled on a piece of paper – with no indication of how or when further treatment is going to take place.
In my view, for someone who is trying to understand a new diagnosis like FND which can be hard to understand this is usually not acceptable.
A doctor wouldnt tell someone they had epilepsy or multiple sclerosis, give them a website and not arrange follow up.
Sometimes, I know people can feel annoyed with me, as the person who made this website. Is this all there is?
I started this site in 2009 because I had nowhere to send my patients for information about FND. Now we have many great patient led FND organisations as well as other websites made by professionals.
But I know that information alone is rarely treatment. For some people information can help point them in the right direction and help them a lot with their own rehabilitation.
We did a study in the Netherlands (led by a brilliant young neurologist Jeannette Gelauff) published in the journal ‘Neurology‘, which looked to see how much information alone could help with FND. What we found in 186 people with FND was that those that had more detailed information did appreciate it, but perhaps not surprisingly it didnt change how people were doing at 6 months. People with FND need treatment not just information.
So – I hope its clear that I share your frustration, if you have troubling symptoms but all youve been given is this website.
We will be re-directing you to the University of Edinburgh’s donate page, which enable donations in a secure manner on our behalf. We use donations for keeping the site running and further FND research.