Our Vision
We want people with symptomatic hypermobility (EhlersDanlossyndromes EDS) (HypermobilitySpectrumDisorders HSD) and neurodivergent (autistic, ADHD, dyspraxic,) to have equal opportunities in education, health arenas, social care, employment and transport accessibility.
SEDSConnective improves and actively supports the lives of people with EDS, HSD and ND (primarily autism, ADHD, dyspraxia and TS) and associated conditions, families and carers. They do not need a formal diagnosis.
SEDSConnective is a charity (registered in 2022) and originally set up as a voluntary group in June 2018 to support with Ehlers-Danlos Syndromes / symptomatic hypermobility. The symptoms include joint issues, arthritis, Chronic Fatigue Syndrome/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, mental health and emotional health.. This includes providing funding towards EDS hypermobility aware activities such as specialised Pilates, horse riding, disabled cycling, sport disability games, swimming disabled rugby, creative arts, 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, health and research webinar forums, Clinical Commissioning Groups, musculo-skeletal advocacy, NHS England and medical training for medical practitioners.
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. www.sedsconnective.org
Our impact on the community
Already SEDSConnective 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. We are doing this for ourselves as so often our issues were thought to be made up and only boys or men could be neurodivergent. We know this is not the case and we are looking at pioneering this important work
