Stiff Person Syndrome (SPS) is currently in the headlines after Canadian singer Celine Dion shared a heartbreaking video of her suffering an intense from it. And one person who can relate is Karen Long, who has had to adjust her life to living with SPS. For Karen, the condition causes her to freeze on the spot and then fall over when she is startled.
The debilitating 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. Recalling an early episode, the 53-year-old from Romsey in Hampshire 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.
” The proud mum-of-one 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 recal.
