Stickler conference

As I said last week there is never a dull moment in the Hughes household, and this week has been even more chaotic than ever. This weekend, 3-5th November I have my usual Stickler syndrome conference in Coventry, and frantically trying to organise everything, wondering if I will be ready in time. Then just as I am in the throes of getting on top of the job I received the proofs of my latest book A-Z of Curious Sussex asking for them to be returned by 3rd November so it can be launched on 1st December!   I can’t do it, are words that never enter my mind, so it means that I will have to find that little time to do them.

Such is the nature of Stickler syndrome organisation of events are not always straight forward, with some members having to pull out at the last minutes due to illness, whilst others now find they are well enough to come, so there is a scramble to rearrange the delegate list and plenty of liaising with the hotel to make sure that everything goes smoothly.  It is a very full programme this year, and one that is packed full of fun and networking as well as a day of up to date information from the consultants.  This year I have more than half new members who are coming to the conference for the first time, but they are guaranteed a warm welcome and a hug or three.  These events are highly subsidised through member fundraising, so that the weekend is accessible to all.  Many, though no fault of their own, have to settle for a lower paid job or part-time employment, which means unfortunately many are forced to take early retirement in their forties, which puts some in dire situation, so a weekend away can be the highlight of the year for many.

Giant Retinal Tear

We begin on the Friday evening with a welcome drink and a three course dinner followed by some entertainment.  This year one of our 16-year talented youngsters is going to sing for us.  The rest of the evening is spent networking.  The families are on various stages of the ‘Stickler’ road and those who have lived with the condition for a while are only too happy to talk to those who are newly diagnosed and apprehensive.  It is such a pleasure to see them arrive not knowing what to expect and leaving full of hope of the future.

Saturday is given over to the medical professionals, and this year we start with a presentation on retinal detachment and Stickler syndrome over 25 years – then and now, followed by the recent rheumatology findings and a coffee break.  We return to the lecture theatre for a presenting by a specialist orthoptist who will explain how she tests visual testing in young children.

Stickler syndrome affects many parts of the body

After a buffet lunch and a time for socialising we begin the afternoon session with a presentation on hearing impairment in Type 2 Stickler syndrome, which is followed by afternoon tea and the last session of the day on the benefits of positive thinking.  The evening ends with our conference dinner and dance with a resident DJ, just the thing to end a gruelling day of information overload.

Sunday is a far more relaxed day when, after a leisurely breakfast, we have two final presentations, one on the Family Support and Early Intervention Service for the Guide Dogs for the blind, and the National Family Support Co-ordinator for the Guide Dogs for the Blind.  The conference ends with farewells before gathering together for a Sunday lunch.  All that is left now is for me to tackle the proofs of my book and get back to normality.

Wendy Hughes and Mr Martin Snead

 

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.