On holiday in Malta with her late husband Karen Long had to call out to him- when she suddenly found she could no longer walk. It was one of the first symptoms of a rare and debilitating condition. Karen Long has had to adjust her life to living with Stiff Person Syndrome the medical condition that has been making headlines since Celine Dion revealed she is suffering from it too.
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, she 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." Now 53, 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 .
