SEDSConnective CIC | Localgiving

SEDSConnective CIC

We actively support Ehlers-Danlos and people with symptomatic hypermobility with associated conditi

SEDS is a community charitable social enterprise, originally set up as a voluntary group in June 2018 to support those in Sussex with Ehlers-Danlos Syndromes / symptomatic hypermobility. The symptoms include joint issues, arthritis, CFS/M.E, dyspraxia, autism, dizziness like Postural Tachycardia syndromes, fibromyalgia, reflux, migraines, temperature issues, stomach, bowel or bladder issues, those with allergies and more. Our aims are to provide members and their families / carers with information and to actively maintain or improve their physical and mental health. This includes providing funding towards EDS hypermobility aware activities such as acupuncture, pilates, horse riding, disabled cycling, sport disability games, massage, osteopathy, physiotherapy not available on NHS. Access to support online for members during this time both shielding or just isolating. We advocate actively by being involved in physical and mental health forums, transport accessibility forums, education webinar forums, Clinical Commissioning Groups, musculo-skeletal advocacy, NHS England and medical training for would be doctors. www.sussexeds.com

Why the community needs us
''No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndromes'' - Prof. Grahame. EDS , HSD and JHS affects all ages and genders yet often not diagnosed or misdiagnosed. So we are left without knowing why or being believed. This can lead to missed education attendance, academic targets. Increases the chance of more injuries unemployment, chronic disability both physical and mental stress. We supply support advocacy, belief and positive activities.

Our impact on the community
Already SEDS has helped save 6 lives. We have members of parents/carers from 7 weeks to 88 years old. We have many testimonies from members who now, after 50 years in some cases, and have just received a diagnosis. Unfortunately, after diagnosis there is no care pathway for adults and for the most common type of hypermobility Ehlers-Danlos syndromes and Hypermobility Spectrum Disorder, are discharged. This has a detrimental effect on families, friends, employers and the tax payer.

Volunteers needed

People with uptodate skills with IT 365 and ios expertise. Video and events host and editing specialist volunteer. Fundraiser. Admin personal assistant. You do not need to know about our syndromes but a passion to help is key! Open minds are a bonus!

What your gift could provide

£100

a months' exercise group class

£50

1 individual hour of physical therapy or activity

£10

goes towards buying a book on EDS HSD JHS

Fundraise for us!