Carole

Suffering in solitude

Stiff person syndrome

Hello,

I have Stiff Person Syndrome. Emotional stiffness, loss of desire to see friends, because there will be emotions. Dizziness. Crossing wide open spaces – even when accompanied – makes my back cramp. Falls, loss of independence. Stiffness when people look at me. I thought I’d go mad.

No more skiing, biking or walking alone, not even with my dog. It takes an arm to support me, even a grocery basket isn’t enough.
Regular hospital appointments. Trials of different treatments with serious side effects; being told at the start of our illness by a specialist doctor that this is not a rare disease, but an orphan disease of no interest to researchers, and that we must not count on or hope that a treatment will be discovered for it. Incredible, you might say. That’s what I said to myself as my husband and I left his office. This doctor blew out the flame that fuelled my hope of recovery. I was sick for over a week afterwards.

Now I’m regaining hope thanks to several rare disease associations around the world. I’ve managed to find sufferers in the US, Australia and the UK, as well as researchers interested in the syndrome. Yes, Mr. Specialist, I’m counting on and hoping that one day we’ll be cured! And my flame has been rekindled and I warn you that no one on this earth will breathe on it again.
Greetings to all those who suffer in solitude.
Carole