SEDS are delighted
SEDS Delighted With £500 Donation From Sussex Police
SEDS (Sussex Ehlers-Danlos Syndrome and Hypermobility Support) is delighted to have received a cheque for £500 from Sussex Police (Property Act Fund) – the invaluable donation will be used to provide tangible support to those affected by this little known, life-limiting condition.
Ehlers-Danlos syndrome (EDS) is a group of rare inherited conditions1 that affect connective tissue which can be found throughout the body2. Nationally and locally it is severely under recognised, under diagnosed and under treated and as a result there is no defined care pathway within the NHS. EDS can manifest in a number of ways including joint hypermobility, loose, unstable joints that dislocate easily, agonising joint pain, extreme fatigue and skin that bruises easily to name a few.
Jane Green, chair of SEDS, launched the local voluntary community group in June 2018. Since then she has been working tirelessly with her board and volunteers to support members across Sussex, starting initially in Crawley, Mid Sussex and Horsham area now with members all over Susses, with positive EDS/HSD activities, hobbies and events to raise local awareness.
One SEDS member who has recently benefited from support said: “Thanks to SEDS I have been able to afford regular massage to help with my back problems from Ehlers Danlos making it easier to walk and stand for longer periods of time meaning that shopping trips to the supermarket aren't as difficult as they were and I feel more able to tackle everyday activities. “
Speaking at the cheque handover (Park Barn in Horsham Park on Saturday January 11), Jane Green said:
“I am delighted to see you all here today and particularly welcome are our local MP Jeremy Quin and Councillor Kate Rowbottom, chair of Horsham District Council. I would also like to thank Sussex Police for your amazing donation - you have no idea what £500 means to our members. This can help us continue providing funding for therapies and activites for them”
Sussex Police3 has also pledged to allow SEDS members intermittent use of their minibus which will enable them to get to organised events, support groups which they would otherwise be unable to attend.
@horshamdc, @sussexpolice, @jeremyquin, @sussex_eds