Two women come together to raise awareness of rare disease

Originally posted by Uckfield News on May 10, 2018

Two young women who have an incurable and rare disease organised a coffee morning yesterday to raise awareness of Ehlers-Danlos syndromes.

Emma Woolley, 41, and Anita Gallemore, 44, met at Temple Grove Care Home at Herons Ghyll 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.

All funds raised will go to The Ehlers-Danlos Society and the event got off to a good start when Alison Barnes, general manager, presented Anita and Emma with a cheque for £200 on behalf of the home’s owner Medici Healthcare. Another £310 was raised during the event.

So little is known about Ehlers-Danlos syndromes that it wasn’t until 2014 that Emma was diagnosed.

As a baby she had hip problems, later diagnosed as hip dysplasia. She was put into splints. Her feet had no arches, and she spent years in physiotherapy. She was diagnosed with asthma when she was 11.

Whiplash

In her 20s Emma was involved in a minor car accident and sustained whiplash which she never recovered from. She was left with a permanent neck problem.

Problems with temperature regulation followed. When upright she felt dizzy and sick, and her heart would beat fast, she also got really hot and found it hard to cool down, then bowel and bladder problems began.

It was Emma’s physiotherapist who, after working with her for a long time, suggested she talk to her GP about Ehlers-Danlos syndromes.

She was referred to an expert in London and finally diagnosed. There is no cure for her condition. The only treatment is physiotherapy to try to keep muscles strong, countering the connective tissue disorders that disrupt the most fundamental processes and structures of the body.

Emma said statistics show something like one in 5,000 people has one of the 13 sub-types of Ehlers-Danlos syndromes which are starting to get more recognised.

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