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What sort of week have you had?  Mine has been chaotic to say the least, and I feel I am stuck on a merry-go-round unable to get off at the moment. It began with my usual session in the hydrotherapy poll and I am happy to report that I am now walking without the aid of a stick.  Yippee. This was followed by a two day visit to Addenbrooke’s in Cambridge, not wearing my patient’s hat this time, this will happen on 18th-19th October.


This time I was wearing my support group hat for the annual review meeting with NHS England, reporting back on the service from our member’s point of view.  In 2011 we were granted funding to set up a Stickler Diagnostic Clinic where patents can come from all over England (with special arrangements for patients from Ireland, Scotland and Wales) for a one stop appointment to see an ophthalmologist, audiologist and a rheumatologist all in one day.  It is a long day, but well worth the effort to see the experts on the condition.  This clinic has now been taken on a service and is a first class facility.  I had a day home to rest before setting off to Coventry to put the final touches to the Stickler annual conference 3-5th November.  Due to my own ill-health the invitations were late going out, but it is beginning to come together and it promises to be another super event which starts with a dinner on the Friday night, a day to presentations from the professionals on the Saturday following by another super dinner with entertainment.   Sunday is more relaxed with our AGM and non-professionals offering help and information.

merry go round

The conference ends with Sunday lunch, but the most important part of the conference is the networking between families.  Some are newly diagnosed, very apprehensive and unsure, other are half way along the Stickler road, and others, like me have lots of experience of the condition, and all are happy to chat and reassure those beginning the journey and in formal discussions range from emotions, relationships done to the nitty-gritty of living and coping with a long term medical condition.  The cost of the weekend is kept deliberately low, so that our lower income families can attend, and everyone agrees that they all gain as much from the medical presentations as they do from the informal networking that does on during the weekend.