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West Sussex woman tells about living life with 'invisible disability'

A West Sussex woman who had to leave her job due to the effects of an 'invisible disability' has set up a group to support others going through the same thing.

Jane Green from East Grinstead has Ehlers-Danlos Sydrome (EDS) and hypermobility, for which she was diagnosed in 2015.

EDS is a range of genetic disorders that affect the body's connective tissues, including skin, joints and blood vessel walls.

Those with the disorders can experience issues ranging from hyper-flexible joints and skin to inflammation, chronic pain, chronic fatigue and osteoarthritis.

While some people are able to lead a relatively normal life with EDS, it can cause problems with work and education as well and is even life-limiting for some.

There is no known cure for EDS, which affects around one in 5,000 people globally, and it can be hard to diagnose at all as many of its symptoms are often confused with those of other issues such as chronic fatigue syndrome, arthritis or fibromyalgia.

Jane, who has reported having problems since her childhood, told Spirit FM that she was forced to retire early from her role a support teacher for autistic children due to concerns she was making up symptoms.

"We try to actively support our members, because we've lost so much... I was forced to give up my job, one I'd loved and worked really hard for. "I wasn't believed to be injured, let alone disabled, and I was told it was all in my head, and did I really not like my job? "I was told at my age, we all get aches and pains, and I thought, having an ankle that's an inch to three inches away from where it should be is more than painful."

In 2018, Jane set up the Sussex Ehlers-Danlos Syndromes and Hypermobility Support Group, also known as SEDS, which looks to raise awareness of the condition and provide support for those with it in terms of accessing medical help, activities and hobbies.

These include horse related activities, pilates, bike riding, acupuncture and hydrotherapy, myofascial massage, equine therapy, craft therapy, counselling, osteopathy and meetings with speakers.

"When I had to retire, I didn't know anything about Ehlers-Danlos and I joined a national charity. I thought that was good but that there could just be a lot more. "I wanted to get that spark of joy back for people because it's not fun to be chronically ill all the time. "What we do is fund our members as far as we can with therapy, if that's what they want, its their choice and the important thing is that it's finding out what works for them."

The group, like many others, has been forced to change its ways of delivering services due to the coronavirus pandemic and is now offering a wider range of activities online, including consultations via video calling.

They have been working on a number of ways to help those with hidden disabilities cope with the changes being made as part of social distancing and safety rules, including creating cards for those unable to wear face masks because of their condition.

SEDS has received a number of awards in its short time since forming, and has received the support of one of the key researchers looking into the condition.

Dr Jessica Eccles, who works at the Brighton and Sussex Medical School as a senior lecturer, recently became a patron of the group.

She was awarded a prestigious MQ Versus Arthritis Fellows Award to conduct a randomised clinical trial of a new targeted treatment for anxiety in hypermobility.

Jane has urged anyone who may feel as though they are struggling with issues that may amount to hidden disabilities to get in contact with medical professionals or find support communities that will be able to talk them through their symptoms and work out how to proceed further.

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