5d 18h 53m
05 December 2020
Sussex Ehlers-Danlos Syndromes and Hypermobility Support (SEDS) is a volunteer-led community group that provides support to sufferers of Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) and their carers, families, and friends, in Sussex.
There is little NHS support for sufferers as it is rarely-known and not often diagnosed for many years. As the condition affects the connective tissue it can impact people in a huge number of ways, which is one of the reasons getting a diagnosis can be complicated, and many of our members weren't diagnosed until their 40s or later despite having the condition since birth. We hope to change this as earlier diagnosis can make a big difference to sufferers later in life and we provide support to anyone that needs it regardless of age, race or gender.
We are raising funds to support members of our group for example by running regular meetings in community venues, and helping them get the support they need for both their physical and mental health. We also part-fund activities such as Pilates, horse riding, acupuncture, and hydrotherapy to support members. We make sure we source the best local people with the relevant knowledge.
Sharing knowledge and supporting members has already saved two lives - help us save more and support local residents.
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