We actively support Ehlers-Danlos and Hypermobility sufferers with associated conditions in Sussex.
SEDS is a voluntary community group set up in June 2018 to support those in Crawley, MidSussex, Horsham with some further support across the whole of Sussex with Hypermobility disorder or Ehlers-Danlos syndromes and associated conditions. Our aims are to provide members and their families / carers with information and support to improve their physical and mental health, this includes providing funding towards EDS hypermobility aware activities such as acupuncture, pilates, horse riding, disabled cycling, spasm massage, osteopathy, physiotherapy not available on NHS. Access to support online for for non-mobile members and those with mental health issues. We also actively support public awareness by getting involved in physical and mental health forums, transport accessibility forums, education forums, County Council, Clinical Commissioning Groups, Musculo-skeletal Sussex, NHS England. We aim to raise awareness by providing EDS books Sussex wide. We partner with other charities/groups.Why the community needs us
''No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome'' - Prof. Grahame. Sufferers of all ages and gender are affected by EDS yet often not diagnosed or misdiagnosed. Sufferers 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. We supply support, belief and positive activities.Our impact on the community
Already SEDS has helped save 4 lives. We have members of parents/carers from 7 weeks to 87 years old. Most of our sufferers are girls/ women due to our hormones but we do have a growing boys/men group who if affected are seriously affected. We have many testimonies from members who now after 50 years in some cases now have a diagnosis. Unfortunately after diagnosis there is no medical pathway so our outcomes and to continue supporting our member and finding out what works.
We need anyone with admin. experience, up to date skills with IT , digital and social media is a bonus. Administration in organising lists, rooms, taking minutes, resourcing meeting places, plus anything else volunteers have in their skillset