I'm Sarah and am pleased to take on the role of Parents Coordinator. My daughter Annabelle was diagnosed with Vascular EDS in Dec 2012 at the age of 3 years. It was a big shock to us and we found EDS UK a big support at a very hard time. I am very pleased and feel privileged to be joining their team. I hope I can bring comfort and advice to all parents that need that extra reassurance or help with EDS support.
My name is Matt and I got involved with EDS UK because my wife Jen has EDS. Over the years I have learnt a lot about the often misunderstood condition and have become passionate about sharing and exchanging information on it with others who are affected. I've also learnt a lot about coping as a partner of someone with EDS, how to help them as well as myself in dealing with it. Partners, friends and family are important supports for those with EDS, and are sometimes full time carers. It's important that their challenges are understood too. If we can help ourselves we can help our loved ones and I strongly believe this can make things better for everyone.
I am pleased that it has now been agreed to include the role of Elders Coordinator amongst our various coordinators. Perhaps this is because I myself am now an ageing EDS UK member. Many of you have travelled the road to increasing maturity with both the charity and myself.
Being very aware of the sparsity of knowledge as to how the EDS types and ageing interact I am keen that we encourage and support research which will fill in the gaps. Hopefully this will provide more effective support. I look forward to discovering more about the important issues for those of us of maturing years, say those 60 and over, and acting as a conduit so we can support each other.
I will of course be continuing in my roles of Trustee and Medical Adviser for speech and language therapy related issues.
Hi. I’m Robin, EDS UK’s men’s representative. I live in leafy, hilly North London. I’m a musician and hospital ward volunteer. I am passionate about music (playing and listening), cooking, tennis, rugby, F1 and Arsenal. I am very interested in science, particularly medical science and healthcare. I’m a commoner in regards to having EDS - Hypermobility Type, which was diagnosed Jan 2015 at UCLH. I am keen to meet and speak with as many of the male members as possible. I’m easily contactable through email, facebook, twitter and the old fashioned telephone.
My main aims include supporting and empowering men to feel like they have more control of their care, and helping men address stigma associated with chronic conditions such as EDS and it’s related conditions. Get in touch about anything.
Child Protection Specialist
I volunteer as a child protection specialist for the EDS Support UK Charity. I have my own business and work long hours but I use my spare time to help those most in need of advice and support in the very difficult and emotive field of Child Protection.
I have first-hand experience of Ehlers-Danlos syndrome as I and my three children have the condition. I understand the difficulties and frustrations of having EDS, especially as a patient, a parent and a working mother.
I have over thirty years experience of working with children and I hold numerous qualifications including a BA 1st Class Honours Degree, the Child Protection Professional Certificate in Joint Investigation and Achieving Best Evidence, and many more. I have a wealth of knowledge and involvement in criminal investigations and prosecutions covering the whole spectrum of the Child Protection system. I continue to work extensively with professionals from all agencies. I train Safeguarding matters to nursery nurses and those who work hands on with children and I have previously been a trainer of Safeguarding issues to professionals across the multi-agency spectrum. I volunteer for the NSPCC and I have a comprehensive understanding of policies, protocols and practice in Child Protection.
It is always my intention when working with those who have EDS to facilitate positive communication and cooperation between families and professionals and to encourage good working relationships. The aim is always to achieve the best possible outcomes for children and families and my ethos is always in the best interests and welfare of the child.