These sites may (or may not!) be useful but hopefully may give a few ideas…
EDS UK is here to support people who have EDS, educate those who need to learn more, and raise funds to enable further research and development.
The HMSA aims to provide support and information to those affected by the Syndrome and to promote knowledge and understanding within the medical community and the public at large.
A bit about the genetics http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome
The list goes on and on – a Google search will offer lots of support groups, medical details etc, but please remember that there are many different opinions about EDS and the other conditions I’ve listed – discussing your own symptoms with your Consultant or other medical practitioner is always a good idea.
There is a vast amount of information available with most sites/forums being based in the States where medication and treatment protocols vary from here in the UK. This site was fantastic when Giles was tiny:
The platelet function defect that Giles suffers from doesn’t have a ‘name’ and as such doesn’t really have a support group. There are plenty of groups out there associated with other bleeding disorders and I suspect the Haemophilia Society would be able to point you in the right direction if necessary.
Supporting us through the nasties of multiple blood tests, platelet transfusions and visits to hospital have been the amazing team at the Great Ormond Street Haemophilia Unit and the wonderful play therapists at the hospital. They’re supported by the GOSH Charity so if you fancy making a difference to a huge number of remarkable children, perhaps you’ll consider having their logo on your Christmas cards this year…
Without the platelet transfusion he received prior to his operation, Giles stood a very real risk of bleeding uncontrollably – and possibly could not have had the operation that has made him so much better as the risk of bleeding out would have been too high. So if you give blood, thank you so much. If you can give blood and feel able to do so, the Give Blood website should tell you everything you need to know.