Survivors seek online route to spreading their lived experience


A group of thalidomide survivors from across Europe are hoping to share the knowledge they have gained from half a century of living with their impairments through a new online community.

They are hoping their website will connect people affected by congenital limb differences (dysmelia) and ensure the knowledge they have gained is “preserved and built upon”.

They also hope to share their experiences of leading independent lives with younger people with dysmelia across the world.

The Dysnet website was set up by the European Dysmelia Reference Information Centre (EDRIC), which was itself set up three years ago by the UK’s Thalidomide Trust and Sweden’s thalidomide organisation FfdN.

Thalidomide was finally withdrawn from circulation 50 years ago, following mounting evidence that the drug caused birth defects, particularly shortened arms and legs.

EDRIC’s four board members are all thalidomide survivors, from the UK, Germany and Sweden, and they are now hoping to expand the board to include people with other forms of dysmelia.

The site will provide support and information, but also act as an archive of research and historical documents, encouraging contributions from across the world.

As well as the website, Dysnet has launched an online community on the RareConnect network, which connects people across the world with rare health conditions, and will be available in English, French, German, Italian and Spanish.

EDRIC also wants Dysnet to draw together the many small support groups for people with dysmelia that are scattered around the globe.

EDRIC is chaired by Geoff Adams-Spink, a thalidomide survivor, the BBC’s former age and disability correspondent and now a disability equality consultant.

He said he was expecting conversations through the site about how to access the right kind of medical expertise, advice on daily living, such as car and home adaptations, and pain management, issues that will be shared by people with dysmelia across the world.

One of the main reasons for setting the site up was to address health inequalities.

He said: “It is such a rare condition that surgeons and physios just do not know how to treat us.”

The hope is that Dysnet will build up a network of experts and eventually organise conferences and even raise funds for research.

Adams-Spink said they hoped to prevent people with dysmelia needing to “reinvent the wheel” when seeking a solution, as it was likely that “some group somewhere else has already solved that problem”.

He said: “As a critical mass, thalidomide people are around 50. We have had a few milestones. We think for younger people we can provide a bit of guidance and as we age we will be learning ourselves as well. The more of us there are the better.”

Another aim of Dysnet, eventually, is to establish a worldwide register of people with dysmelia. There are an estimated 30,000 in the European Union, but many countries do not keep their own registers of birth defects.

A global register could help identify clusters of people with impairments linked to environmental factors, such as in Fallujah, Iraq, as a result of the US assault in 2004, or survivors of the use of Agent Orange in Vietnam, or of the Chernobyl nuclear disaster.

There has already been contact from campaigners in Sicily concerned about a cluster of babies born with impairments possibly caused by environmental factors.

Adams-Spink said: “One of the things we want to do is shed some light into these areas.”

23 May 2012


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