Securing Knowledge and Expertise
At present, inequalities in the health and support for dysmelic patients are extreme. Work by the Ex-Center (Sweden) and the Thalidomide Trust (UK) has shown that much of the pain and deterioration experienced by dysmelics may be both treatable and avoidable. They have also demonstrated the value of international cooperation and knowledge sharing between experts where advanced and highly specialised orthopaedic surgery has been delivered in a multidisciplinary context to patients who had previously been advised that treatment was impossible.
It has been demonstrated that health problems common to dysmelic patients in these two countries, which have been locally declared untreatable, do have effective treatments.
Evidence from current work with people with damage to their central nervous system, suggests that if people with disabilities or chronic conditions receive proper support and access to credible information about managing their condition, the rate of deterioration can be slowed significantly, by as much as 20-30 years. The cost of service provision can then be reduced and resources better deployed.
The effect of such treatment and support, based on knowledge sharing and multidisciplinary health support, has been to restore physical function and independence to many individuals.
Greater demand on scarce resources
Since such people often require greater input from family and health services, the cost of treatment, care and support is much higher than the norm which puts greater strain on scarce resources. They frequently encounter problems when they try to access appropriate services.
The urgency of this work for the thalidomide survivors is that we are all aged 50 or above and we are experiencing accelerated ageing - mainly in our musculo-skeletal systems. It is probably fair to assume that there will be similar effects on people with other congenital limb damage. There is also a danger that a lot of the knowledge and expertise - built up as a result of the thalidomide disaster - is at risk of being lost because many of the expert practitioners have either retired or died.
While the thalidomide group makes up a major proportion of all EU dysmelic people, those with dysmelia continue to be born in every country. EDRIC proposes to 'capture' all of the available expert knowledge relating to dysmelia - its occurrence, support, and treatment - and share this throughout the EU and beyond for the benefit of all dysmelic patients, their families, and supporting medical and care services.
Making support available
The UK Thalidomide Trust has been exploring the health issues of its beneficiaries in close detail for more than 15 years, and has undertaken its third major medical research project in nine years, studying the symptoms and effects of dysmelia-related damage among its beneficiaries.
The work of the Thalidomide Trust is restricted by law to thalidomide survivors born there - possibly only 25-30% of the people affected by dysmelia in the UK. The German government, with the EU's largest national group of thalidomide survivors (2,700), is exploring ways of making specific support available to this group. These may comprise 30-50% of the number of dysmelic patients within that nation.
There is currently no adequate provision for the health needs of dysmelic patients anywhere in Europe, with the possible exception of Sweden.
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