UK Stickler Syndrome Conference 2016
Maria joined CLAPA after her daughter was born with a cleft palate. She later discovered that both she and her daughter had Stickler Syndrome. Stickler Syndrome is a rare condition which can include eye and hearing problems. It is often misdiagnosed or missed entirely.
Maria has been an active CLAPA volunteer for a number of years. She is currently a Parent Supporter, the organiser of a Happy Faces Group, a Branch Committee Member, and a CLAPA ambassador giving talks to local midwives.
She recently attended the UK Stickler Syndrome Conference, and here she shares her thoughts on the weekend.
“At the end of October I attended the 9th UK Stickler Syndrome Conference. It was a great experience and I learnt so much about the syndrome, the care involved and the possible yet to come.
“There were speakers from the various medical professionals who treat patients with Stickler’s at Addenbrooke’s in Cambridge. These included: Dr Nicholas Shenkar who advised us about pain management, Sister Annie McNish who is a specialist Stickler’s Nurse and Mr Martin Snead and Mr Philip Alexander who discussed genetics and retinal detachment, repair and prevention.
“The main reason I attended was to meet others like myself who have Stickler’s Syndrome and have children who have been diagnosed with Stickler’s too. As a parent it was great to talk to others and compare symptoms and treatment.
“I now feel in a better position with my understanding of Stickler’s and how it will continue to affect our family. I am also going to share what I have learned with my GP and the other professionals and teachers involved with our family.
“Wendy Hughes and her husband Conrad arranged a great conference and I look forward to attending the next one.”
