After 15 years of constant pain and £20,000 spent looking for answers, Imogene Newland finally received her diagnosis for Ehlers Danlos Syndrome.
The 42-year-old, from Aberdeen, was initially diagnosed with chronic fatigue when she became ill back in 2007.
It was not long before she started developing more severe symptoms, including fainting and seizures, as well as difficulties walking and talking.
Despite this, one of the neurologists she saw told her she was being “hysterical”.
“For the next seven years, I was unable to work, live or travel independently,” she told The Press and Journal.
“I spent years thinking I was going mad. I went to see specialists but they could never find anything.
“So getting my diagnosis was absolutely a relief.”
Diagnosis received after 15 years
In 2022, Imogene was finally diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS).
The genetic condition affects the connective tissues that support the skin, bones, blood vessels and other organs.
Imogene discovered her problem area was her neck – with her C1 partially dislocated and compressing her left jugular.
When Ehlers Danlos involves the head and neck it can lead to the neurological symptoms which Imogene was suffering from.
To avoid undergoing a £50,000 surgery, she decided to see if she could make her neck more stable through exercise.
“If you have Ehlers Danlos, the best thing you can do is stay active,” she said.
“It has changed my life. To go from where I was to being back climbing is astonishing”.
Future Strength Team taking on two-day challenge
As a youngster, the piano teacher was inspired to take up hillwalking and scrambling by her dad.
Being forced to give up her hobby when she fell ill was one of Imogene’s biggest challenges.
The Woodend resident has worked tirelessly to strengthen her joints so climbing and hiking could become a reality again.
And next month, she will take on an epic walk on the Isle of Skye with a goal of raising awareness for the condition and funds for the Ehlers Danlos Society.
She will be joined by a support team and fellow climbers Kamil Drewniak, Sam Percival, Ian Williamson, Lara Davies and Rebecca Fry to tackle the 22 summits of the Cuillin Ridge Traverse.
“We’re going to do it over two days,” Imogene said.
“The ridge is 22km long in total and a 13,000ft ascent.
“A lot of it is quite narrow and it’s quite challenging, because a compass doesn’t work, but I’m excited.”
The Future Strength Team’s expedition will also be filmed as part of a documentary by filmmaker Faust Talacka for the Dundee Mountain Film Festival.
Raising awareness of Ehlers Danlos Syndrome
The average time it takes a person to receive a diagnosis for Ehlers Danlos – which is a group of 13 connective tissue disorders – is 10 to 12 years.
Some people will go decades without answers and support.
“As far as I know, it is not routinely studied in medical school,” Imogene said.
“Most GPs are not aware of it, and it can present in different ways, so is hard to spot.
“There will be people out there who have it and are not aware of it, so it’s worth getting checked for.
“Not being able to access the right support for years was detrimental.”
Imogene hopes sharing her story will raise awareness of Ehlers Danlos and help others receive a diagnosis more quickly.
The Fragile Strength Team is raising funds for the Ehlers Danlos Society.
Their JustGiving page can be found here.
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