Paralympics celebrated athletes with limb differences but more must be done to improve lives of everyone with limb loss
European Limb Loss Day 2012:
Monday 3 December 2012, LONDON: Charities and organisations from across Europe that support people with limb loss or deficiency are today (Monday 3 December) marking the second European Limb Loss Day.
The profile of people living with limb difference, whether congenital or through amputation, was raised during the Olympics, with stellar performances from Jonny Peacock, Oscar Pistorius and Sarah Storey, to name just a few.
However, despite showing how much some people with limb differences can achieve, many thousands of less athletic people with similar disabilities, face daily difficulties to access expert health care, suitable prosthetics and often, the ability to travel on public transport because of accessibility problems.
EDRIC (European Dysmelia Reference Information Centre) that runs the DysNet online Limb Difference Network, has recently launched a survey to get a better picture of what life is like for people living with limb deficiencies across Europe. It's anticipated the survey will run for several more months and be translated into more languages - at present it is available in English and French. However, even after just a few weeks, it's clear that many people are forced to travel long distances or across borders to find adequate medical expertise for their conditions.
EDRIC chairman, Geoff Adams-Spink said, "This is an issue we're taking really seriously, because no one should have to make a long and often difficult journey just to find a medical expert who can treat them. It's our aim to develop a network of experts across Europe and eventually, across the world, who can share their knowledge so that more professionals can learn how to help people with limb deficiencies."
Congenital limb loss is rare and can be caused for many different reasons, including genetic, environmental, chemical such as thalidomide, or through a developmental anomaly such as Amniotic Band Syndrome where the membranes in the womb wrap around limbs and prevent their development. However a limb deficiency is formed or acquired, the same issues of access to care, adaptations and travel are the same.
European Limb Loss Day is held within the UN International Day for Persons with Disabilities and is supported by the Associate Parliamentary Limb Loss Group in the UK, The UK Health Secretary, Jeremy Hunt and the Deputy Prime Minister, Nick Clegg as well as a host of limb loss or deficiency organisations across Europe.
Mr Hunt said, "As Secretary of State for Health, I am delighted to give my support to European Limb Loss Day. As always, it is an excellent opportunity to raise the profile of amputees and those with a limb deficiency. The fantastic example set at the Paralympics, not just by the truly inspirational performances of our Paralympians but by disabled people playing a vital role in every aspect of the Games has gone a long way towards transforming the perception of disabled people as well as demonstrating the UK's commitment to equality."
EDRIC Director, Charlotte Fielder MBE, will be attending SportsFest on ELLD at Surrey Sports Park near Guildford on Monday evening where Paralympic Medallists will be inspiring young people with disabilities to try our different Paralympic sports.
- The European Limb Loss Day website can be found at www.europeanlimblossday.org
- The EDRIC/ DysNet site can be found at www.dysnet.org
- The Limb Loss Lifestyle Survey can be found at fluidsurveys.com/surveys/edric/elld-survey/
- EDRIC's chairman, Geoff Adams Spink is a thalidomide survivor, and is also a board member of Disability Rights UK
- To speak to Charlotte Fielder MBE or for any other information, please contact Tania Tirraoro, DysNet PR & Community Manager at firstname.lastname@example.org
- The SportsFest website can be found at www.paralympics.org.uk/sportsfest
- EDRIC is a member of EURORDIS, the European rare Diseases ORganisation and has its own moderated forum on RareConnect, run by EURORDIS at www.rareconnect.org/en/community/dysnet
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