Parry Romberg - Clinical Survey Site
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Calton Hill in Edinburgh

My name is Dr Jon Stone.

I am Neurologist in Edinburgh Scotland.

Some years I carried out a large survey of Parry Romberg Syndrome using the internet.

I was helped enormously in my efforts by various people at the Rombergs Connection. If you haven't visited it then I can thoroughly recommend it

Thank you to all the people who took the trouble to take part in the survey - your effort in taking part is hugely appreciated.

I have now published the survey in the medical journal 'Neurology' as follows:

Stone J. Parry-Romberg syndrome - a global survey of 205 cases via the Internet. Neurology 2003; 61:674-6

You can access a copy of the article here

and a specially prepared extended 'public-friendly' article here

You will need Acrobat Reader to open them - available at www.acrobat.com

Hopefully the results will be of some help to people with Parry Romberg just in terms of finding out how common various symptoms are and what sort of experience people have had with different treatment

I have put some other information on this website as well as some links.

Wishing you all the best from Scotland

Jon Stone

Dept Clinical Neurosciences, Western General Hospital, Crewe Road, Edinburgh EH4 2XU jstone@skull.dcn.ed.ac.uk

PS - Although I have found out a lot about this condition by carrying out this survey I have only been involved in the treatment of a few people personally. I'm afraid I am also unable to recommend experts locally or internationally as I am not in contact at present with other experts