by Heather Nye
When my daughter Becky was diagnosed as having Noonan Syndrome we were not told anything about either the condition or any the existence of any support groups. Luckily for us we had Internet access and through this we discovered the existence of The Noonan Syndrome Society, who sent us an excellent information pack, and then later The Noonan Syndrome Support Group through whom we have made many friends and received a great deal of support and information. This was a wonderful help to us, because up until then we hadn't managed to find anyone who had even heard of Noonan Syndrome, let alone knew anything about it.
However the percentage of people in the UK who have Internet access is quite low, and it really worried me to think that there may be many families who have children with NS, who have no idea of where they can find information and support.
I therefore had the idea of producing a small poster which gave information about various support groups, and have been sending copies to various hospitals and medical centres requesting that they display it in their waiting-room or outpatients department. Along with the poster I have also sent an explanitory letter and a brief factsheet on Noonan Syndrome.
I don't know how many of my posters will actually end up being displayed, but I have had a very welcome letter from a consultant at one local hospital saying that they have put up the poster, and if even only one family gets to benefit from it then at least that's a start.
To view the poster, click here
My next 'project' will be to send some information to several national magazines, to see it they will consider publishing even a tiny article...
The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.