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.
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.
She added: “EDS UK has done a fantastic job in making GPs more aware of the syndromes and that is very important. If other people experience similar symptoms then it is worth asking their GP whether Ehlers-Danlos syndromes might be the cause.”
Emma now spends three weeks being cared for at home with her parents David and Carol Woolley and three weeks in respite care at Temple Grove Care Home. She, like her parents, enjoys the break.
“It is a lovely place. I feel part of the family here,” she said.
Emma added she had lost a lot of friends over the years because she often had to break appointments when she wasn’t feeling well. Most of her friends now are online in support groups and it means a lot to her to know Anita.
Anita’s story is similar to Emma’s in that her mother Sandra picked up from birth that something was wrong with her – she was a very floppy baby – but her illness followed a different course.
She told Uckfield News: “I grew up thinking pain was normal. I had pain in my knees and shoulders, then hips and eventually everywhere else.”
Back in the 70s Ehlers-Danlos syndromes weren’t well known. Nobody knew why Anita’s bladder and bowels were being affected, all her inside organs and her swallowing.
Anita was able to walk until she was 15 but gradually went downhill after that.
Anita is now a full-time resident at Temple Grove and says: “I absolutely love, love, love, it here. I am not treated as a resident. This is like my home and I am living with my extended family. The staff are marvellous, all of them.”
She added it was a major relief to meet Emma. “It has done us both the world of good, meeting someone else in the same predicament and seeing each other face to face rather than online.”
Couldn’t believe it
Anita said that when home manager Ali told her about Emma she couldn’t believe it. She and her mother had given up looking for others with the syndrome.
Anita said one of the things that made it difficult to diagnose Ehlers-Danlos syndromes was that for each of the symptoms sufferers saw a different specialist and the individual specialists might not know about the disease.
She and Emma wanted to play their part in making more people in the medical profession, and generally, more aware of it.
Alison Barnes said Temple Grove was pleased to help Anita and Emma host the coffee morning and pleased to see how Anita and Emma were enjoying each others’ company.
She said misdiagnosis and a lack of Ehlers-Danlos syndrome awareness among medical professionals resulted in patients experiencing years of suffering without proper diagnosis and treatments. Diagnosis can now be found following physical assessment, blood sample and skin biopsy.
“This week is all about raising awareness of a really good support group and we are pleased to contribute £200 as a company towards their work in continuing research.”
She added that somebody had said to her recently how lovely it was that you could make new memories in a care home.
“I think a lot of people think that coming into a care home is pretty much it, but we know here that you can actually make new friends and new memories. That is what life is all about.”
Read more about Ehlers-Danlos syndromes and a support network for those with the disease on The Ehlers-Danlos Society website.