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Sussex Ehlers-Danlos Syndromes and Hypermobility Voluntary Community Support Group (SEDS) was set up to help and support sufferers, carers and families of those affected by EDS and hypermobility, including those with symptoms who haven't got a diagnosis. We aim to deliver: information and support for those with symptoms to get a diagnosis and those with a diagnosis to get the right medical help; support with claiming benefits and financial help; access to activities that can help maintain muscle condition without causing damage, such as hydrotherapy, cycling, pilates, acupuncture and horse riding; and social events and online communications to reduce isolation and help support better mental health.
It will bring sufferers, carers, healthcare providers and educators together and enable more work to be done with other support groups where goals align, such as carer support groups, and those where there are clear links in conditions, such as fibromyalgia, autism and ME. It will also enable us to work with the medical profession and educators to ensure earlier diagnosis.