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.


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.





About Wendy Hughes

Wendy turned to writing, in 1989, when ill-health and poor vision forced her into early medical retirement. Since then she has published 26 nonfiction books, and over 2000 articles. Her work has appeared in magazines as diverse as The Lady, Funeral Service Journal, On the Road, 3rd Stone, Celtic Connections, Best of British, and Guiding magazine. She has a column in an America/Welsh newspaper for ex-pats on old traditions and customs in Wales. Her books include many on her native Wales, Anglesey Past and Present, The Story of Brecknock, Brecon, a pictorial History of the Town, Carmarthen, a History and Celebration and Tales of Old Glamorgan, and a book on Walton on Thames in the Images of England series, a company history and two books on the charity Hope Romania. She has also co-authored two story/activity books for children. Her latest books are: Haunted Worthing published in October 2010, a new colour edition of The Story of Pembrokeshire published in March 2011, and Shipwrecks of Sussex in June 2011 and Not a Guide to Worthing in 2014. She is working on a book entitled A-Z of Curious Sussex which will be published in 2016 Wendy also works with clients to bring their work up to publishable standard and is currently working on an autobiography with a lady that was married to a very famous 1940’s travel writer. Wendy has spent many years campaigning and writing on behalf of people affected by Stickler Syndrome, a progressive genetic connective tissue disorder from which she herself suffers. She founded the Stickler Syndrome Support Group and raises awareness of the condition amongst the medical profession, and produces the group’s literature, and has written the only book on the condition, Stickler The Elusive Syndrome, and has also contributed to a DVD on the condition, Stickler syndrome: Learning the Facts. She has also writing three novels, Sanctimonious Sin, a three generation saga set in Wales at the turn of the century, Power That Heal set in the Neolithic period entitled Powers that Heal, and a semi biographical book entitled New Beginnings which deals with two generations coping with blindness and a genetic condition. She has also had a handful of short stories published, and in her spare time is working on several at the moment. She also gives talks on a variety of subjects including Writing and Placing Articles, Writing Local History, Writing as Therapy, Writing your first novel, etc, and runs workshops on the craft of writing – both fiction and non-fiction. She is a member of the Society of Women Writers and Journalists, and a member of the Society of Authors.