Chance for people with rare disease to meet and support each other

So many people were interested in an Uckfield News story about local efforts to raise awareness of Ehlers-Danlos Syndromes that a get-together has been organised for people with the rare and incurable disease.ehlers-danlos-society

A coffee afternoon is to be held at Temple Grove Care Home at Herons Ghyll on Thursday, June 7, at 2.30pm, and the international executive director of The Ehlers-Danlos Society, Lara Bloom, will be a special guest.

Home general manager Alison Barnes said anybody suffering from the syndromes is welcome to attend with carers and friends, socialise with others, and speak to Lara, a sufferer herself.

The event follows a coffee morning held at Temple Grove at the request of two young women who have EDS.

Emma Woolley, 41, and Anita Gallemore, 44, met at the care home and it was the first time either of them had met anyone local with the same disease.

They were so relieved to talk to each other and grateful for the help given to them at Temple Grove that they asked whether they could organise and hold the coffee morning there.

A total of £510 was raised for the Ehlers-Danlos Society – £200 of that donated by the home’s owner Medici Healthcare.

A story was carried on Uckfield News and more people with the rare and incurable disease got in touch prompting manager Alison Barnes to organise another event.

Alison said: “We were very pleased to support Emma and Anita in organising the fund-raising coffee morning and help raise awareness of this horrible disease.

“Now it is obvious that there is a need for a local support group and that is why we are holding the coffee afternoon. It is great that Lara Bloom can join us and we hope EDS sufferers will benefit from coming together, being able to share their stories and learn from each others experiences.

“We have seen what it has meant to Emma and Anita to find each other, and coming together might help other EDS sufferers too.”

Please contact Kerry at Temple Grove on 01825 714400 too book your place at the coffee afternoon.

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