01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Address: Devonshire House, Manor Way, Borehamwood, Hertfordshire, WD6 1QQ
Telephone Number: 0208 736 5604
Email: info@ehlers-danlos.org
Website: www.ehlers-danlos.org
Registered Charity Number: 1157027
Prevalence of EDS: EDS is as common as 1:5000 for the Hypermobility type and 1:250,000 for Vascular EDS. Prevalence is unknown for the rarer types.

What is Ehlers-Danlos Syndrome (EDS)?

EDS UK is a national charity with international organisations and EDS organisations in other countries.

EDS is a group of genetic connective tissue disorders affecting collagen production which result in abnormally fragile and hyper-extensible tissues throughout the body. This can lead to physical disability and in some of the rarer types it is life-limiting.

Connective tissues provide support in skin, tendons, ligaments, blood vessels and internal organs therefore when it is weakened, much of the body can be affected.

Symptoms of EDS include dislocation of joints, pain in limbs, likelihood of faster deconditioning in muscles, stretchy and fragile skin which can split easily, bruising and numbness.  EDS can also cause internal problems such as prolapsing organs, bladder problems, heart valve problems, difficulties swallowing and high/low blood pressure. People with EDS also suffer from fatigue, difficulty with walking and fast heart rate, dizziness and fainting.  EDS can be very far reaching. People face severe ongoing pain and extreme fatigue which can lead to them being bed bound and/or home schooled. They can also have severe restrictions on their mobility and many are wheelchair bound or rely on the use of crutches to get around.

What support is available?

EDS UK provides support, advice and information to those living with Ehlers-Danlos Syndrome. We aim to help them live a full, active and positive life.   We are the only UK-based charity that exclusively represents and supports people with all types of EDS.

We run regular events and conferences to bring our community together, and produce literature and merchandise to increase understanding and improve management of the condition. We have over 50 support groups around the country providing a local peer support network to our members.

We run a free helpline which is available to everyone, including people with EDS as well as friends, families, carers, and healthcare professionals. We also provide support, advice and information via social media.

EDS UK strives to educate the medical community, promote continuity of care, improve accurate diagnosis and provide information on specialist treatment and management of the condition. We also aim to support and fund vital research to further understand EDS.

There are few EDS specialists in the UK and most are London-based.

  • University College Hospital, London provides the most services
  • Specialist gastrointestinal and EDS clinic at the Royal London Hospital
  • Diagnostic services for complex cases provided at Sheffield Children’s Hospital
  • Rehabilitation and pain management programme at Royal National Orthopaedic Hospital, Stanmore, North London
  • Private services for EDS diagnosis and management available at the Hospital of St John and St Elizabeth, North London

Information provided by EDS UK, 15th March 2017

Breaking Down Barriers Project Overview

EDS UK plan to “reach out to the South Asian Communities who are affected by Ehlers-Danlos Syndrome in East London”. They will deliver the following:

  • Information – distribute leaflets translated into different languages to Mosques, Sikh Temples and Hindu Temples. Recruit volunteers from nearby Universities who can assist with the distribution of leaflets
  • Advisor – they already have a member of staff who is able to speak Urdu, Punjabi, Hindu and English
  • Next Steps to Diagnosis and Support – produce a document for individuals to use themselves and to share with the clinicians involved in their care
  • Event Stall – at the East London Mosque on Friday prayer day where they aim to reach out to those who can and cannot speak English

Year 2 Project
There was a delay to the start of their year 1 project, therefore, they will aim to submit an action plan in December with a view to starting their year 2 project in January 2018.