Ehlers-Danlos Support UK is a registered charity supporting people who suffer from Ehlers-Danlos Syndrome (EDS).
EDS is a connective tissue disorder and it’s genetic. It is caused by a defect in a protein called collagen.There are over 30 types of collagen in the human body so EDS is very difficult to diagnose. That’s one of the biggest challenges that face EDS sufferers.
EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome and help them to live a full, active and positive life.
KNOWLEDGE IS POWER
Ehlers-Danlos Support UK’s aims are education, information and research.
It supports those with EDS and medical and caring professionals. It publishes a range of literature, DVD's and merchandise on all aspects of EDS and related subjects. It also links members with each other for mutual support and the exchange of ideas.
One of the biggest advantages of becoming an EDS UK member is that you will receive a list of other members in your Area who are happy to contacted, along with an assigned local contact who will hold quarterly meetings in your Area. This will give you the opportunity to meet others and their families with Ehlers-Danlos Syndrome.
On behalf of Annabelle's Challenge and everyone in the EDS community we personally thank Lara, the board of trustees and office team for their hard work in pulling together such an amazing residential conference in Birmingham.
The Ehlers-Danlos Support UK conference was attended by special guests Sandra Chack & Shane
Robinson from the Ehlers-Danlos Society and guest speakers who covered an action packed itinerary
with informative sessions and updates including Classical EDS and Vascular EDS by Dr Diana Johnson, Prof Nigel Wheeldon & Dr Nigel Burrows. Topics covered during the 3 day event included:
• Dr Glenda Sobey & Rebecca Pollit: EDS National Diagnostic Centre update
• Prof Mike Pope: EDS – a historical perspective
• Dr Clair Francomano: Chiari & cranial instability in EDS
• Dr Brad Tinkle: Key note speaker
• Dr Hannah KazKaz: Management tips with EDS
• Dr Khullar: The bladder and EDS
• Dr Jane Simmonds: Physiotherapy and EDS
• Dr Netali Levi: Psychological features with EDS
• Dr Alan Hakim: Chronic fatigue and fibromyalgia
• Prof Aziz: Gastrointestinal features of EDS
• Dr Jessica Eccles: Autism / ADHD and EDS
• Dr Seneviratne Mast cell / histamine disorders EDS
• Prof Mathias: PoTS and EDS
• Dr Will Wallis: Cardiac features of hypermobility EDS
• Angela Hunter: EDS – Swallow – in TMJ
During the conference we saw first-hand the passion, drive, commitment and motivation from the team of medical professionals who have over the years and are still working tirelessly to advance medicine, management and understanding of EDS.
On the closing day of the conference the amazing Professor Rodney Grahame communicated three final thoughts on EDS:
• No other disease in the history of modern medicine has been neglected in such a way!
• Not just a UK problem; it is a world-wide problem!
• It is a topsy-turvy world where patients often know more about a condition than their doctors
Prof Grahame is a very special man, not only a national hero but an international hero, it was an absolute pleasure to see the great work he has done for the EDS community and to learn his thoughts on EDS past, present and the future.
Well done to everyone! We are so proud of each and every one of you.
Jared and Sarah Griffin