Written by Becky Orpin
Sussex Ehlers Danlos Syndromes and Hypermobility Disorders CIC - Founded in 2018 by Jane Green. Initially set up as a small, online community group by Jane for those with or symptomatic of EDS and HSD, the organisation has quickly grown to over 1,200 followers, from those with the disorders to their families, supporters and even celebrities!
The tireless work that Jane and her small army of volunteers do each day is not only to spread awareness of these sometimes hidden, sometimes visible disorders, but to also share stories, swap ideas and interact with a growing community of support.
SEDS is completely unique in it’s offering to it’s 350 members. Through hard work and determination, Jane applies for funding support from many local and national organisations and then selflessly uses these funds to support those who need it the most.
As and when funding applications are granted - the organisation ensures it has enough to distribute fairly - each and every member is entitled to a share* that they can put towards their own treatments, therapies and even equipment to help them manage and cope with their symptoms.
No other community group in the local area offers a support service like this, and SEDS has gone on to win many awards for dedication and hard work, not only in the community but also nationally.
During the tough year of Covid-19 and lockdown, SEDS continued its mission. Providing a safe space for those shielding alone and looking after those who were scared and vulnerable.
Jane worked hard behind the scenes to create a series of awareness cards for those who were unable to wear a mask because of their disorder. The cards were picked up by other local and national charity groups and currently sit on the DHSC site.
To keep spirits up, and with the help of two amazing patrons who support them, SEDS were able to run several online webinars and events, inviting in guest speakers and medical professionals to speak to members, showcase research and medical opinion and answer questions.
This was particularly important to some, as many were unable to attend health appointments or had them cancelled because of the pandemic. The volunteers worked extremely hard to put these events on for members, despite many volunteers not being comfortable using technology and quite often being ill at the same time, and not having the funds to find external expertise. SEDS continues to grow, with more members joining each week. The awareness of symptomatic hypermobility is becoming more so, and it’s with the support of Jane and all who volunteer at SEDS that this can continue to do so. Most recently, Morgan Flack – Acting Mayor of Crawley nominated SEDS as her charity of EDS and HSD. Morgan was diagnosed with EDS from an early age and is keen to help advocate too, and SEDS are delighted to have her recognition to help drive more valuable engagement.
Looking to the future, the focus remains on the heart of the organisation – it’s members. Driving further to gain more funding to be able to support and offer more and more services to those who need them most. SEDS is a unique, fully volunteer run and a totally special group that we are all extremely proud of!
*(funds permitting and as long as the member meets the appropriate criteria)