Mum misdiagnosed with anxiety and stress found out she had debilitating syndrome

Mum-of-one Karen Long, 53, got her correct diagnosis in 2015 after years of tests and being misdiagnosed with anxiety and stress. She is speaking out to raise awareness of the condition

Karen’s long was misdiagnosed with stress and anxiety (Cover Images)

One mum is speaking out on her debilitating condition after it was misdiagnosed for years as “anxiety and stress“.

Karen Long, 53, suffers from Stiff Person Syndrome (SPS). The condition is currently making headlines after Canadian singer Celine Dion shared a heartbreaking video of her suffering an intense seizure from it.

Karen, from Romsey in Hampshire, can relate all too well to this, as she’s had to drastically adjust her life due to living with SPS.

For Karen, the condition causes her to freeze on the spot and then fall over when she is startled. The illness made it impossible for her to continue her successful career as a software engineer, has destroyed all the cartilage in her knees from falls, and often leaves her body battered and bruised. On top of this, muscle spasms and limbs locking into place can cause excruciating pain for hours at a time.

She was actually suffering with Stiff Person Syndrome(Cover Images)

Recalling an early episode, the mum-of-one said: “I remember being in Malta and my late husband, James, walked off. And I said ‘Come back! ‘ And he asked why and I said ‘I can’t walk’. And then we had a few times when he would go to go across the road, and I couldn’t. He was like ‘What are you doing? ‘ And I would be like ‘I can’t’… Your mind cannot control the muscles.”

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Karen was first diagnosed with the condition when she was 45 but this was after years of doctors failing to understand what was wrong. She admits that the tears she shed when she was first told she had the incurable disease were not for the reason many might think.

“Most neurologists have only seen a couple of people in their lives because it is one in a million,” she recalls of the moment she was given a diagnosis. “He said, ‘You’ve got something called Stiff Person Syndrome’ and he said it’s incurable and so I was a bit in shock and then I burst into tears.

SPS has destroyed all the cartilage in her knees from falls, and leaves her body battered and bruised a lot of the time(Cover Images)
Celine Dion recently shared a video of her suffering an intense seizure from SPS, which has gone viral(NHLI via Getty Images)

“He was like ‘It’s okay, it’s okay. We can do stuff.’ But I was like ‘Actually I’m just relieved.’ Because prior to all of this, I was having MRI scans on my back, I was being told I just had anxiety and stress and all along it was the build-up of SPS.”

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