Sussex Ehlers-Danlos Syndromes and Hypermobility Support (SEDS)
Support for people with Ehlers-Danlos Syndromes (EDS)
Ehlers-Danlos Syndromes is closely related to Hypermobility Spectrum Disorder (HSD). And Pilates, hydrotherapy, osteopathy, acupuncture, physio and massage all help people with EDS/HSD by strengthening and relaxing muscles.
So, our donation of £3,000 to Sussex Ehlers-Danlos Syndromes and Hypermobility Support (SEDS) will fund some of these activities which are offered by SEDS’ Hypermobility-aware specialised practitioners, either 1-2-1 or in specialised groups.
“We are very grateful to the Axis Foundation for their donation. The feedback we are getting from those people with EDS/HSD who have participated in physical activities is amazing. In the longer term we believe that sufferers can sometimes learn to improve – or at least maintain – their own physical health. This might mean less reliance on the NHS from damage they can inadvertently inflict on their bodies. It can also improve their mental well-being” – Jane Green, Founder and Chair of SEDS
More about EDS/HSD
EDS/HSD is a multi-systemic disorder for which there is no care pathway. The condition affects connective tissues throughout the body. Common symptoms include: dislocations, pain, Chronic Fatigue syndrome/ME, allergies, fibromyalgia pain, gastro-intestinal problems, anxiety, heart issues plus other associations. The condition is life limiting: many people with EDS/HSD lose careers, colleagues, friends and hobbies.
“The funding has been amazing – I would not be feeling anywhere near as good without it”
“It made a great deal of difference to my mental health whilst shielding in lockdown”
“Enabled me to carry out a much needed Pilates course following a recent emergency spinal operation and this has really helped my rehabilitation … the instructor is fantastic and very knowledgeable about SEDS”
More about SEDS
SEDS advocates actively for members locally in Sussex and also for their families, friends and carers. The charity also works with other organisations to improve awareness and create a care pathway. During COVID-19 the charity conducted successful online EDS/HSD specialised Pilates classes.
Mental health support
Persistent and acute pain affect mental health whilst fatigue adds to the isolation many sufferers experience. SEDS provides further direct support for members with their mental health.
Pictured: SEDS event day helping members gain confidence and to access travelling; 1:1 Covid-safe deep tissue massage helping muscle spasms rigidity.
Read more here about their work here.