By Shane, Australia, January 22, 2014
I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back, the cause a mystery. At the same time, I suddenly was racked with severe muscle spasms and seizures.
After months in the hospital to fix my back, I was frightened that my back would break again from SPS. No longer able to work, SPS was taking my life away. I felt like I had no future and was losing hope. Muscle spasms and other symptoms from SPS were incredibly painful. I never knew pain like that existed. I spent three months in oncology receiving blood infusions and Intragam to kick start my immune system. My body was attacking itself - I’d lost nearly half my body weight and was unable to eat.
When I was diagnosed18 months later, in 2007, my Neurologist told me the medication would either work or it wouldn’t. The medication was barely helping so I was sent home from oncology. It was one of the scariest days of my life. I rang NORD out of desperation as there was no research on SPS in Australia. I spoke with Steph who was incredibly helpful, a lifesaver in ways as she gave me hope. I told her about throwing my walking stick away and how I started to run, more like an excruciating shuffle on my local beach. She gave me sound advice that helped me through my recovery.
About the same time, I also discovered the Genzyme / NORD team running for rare diseases - they run the Boston marathon each year to raise funds for NORD. The Boston marathon was a childhood dream of mine, but I was in such a bad way from SPS, I wouldn’t dare dream of running this prestigious marathon. Using a walking stick and barely able to move, running a marathon was the furthest thing from my mind.
Then, I decided to fight back. It felt like fight or flight and seemed ridiculous, but running was my way of proving to myself the will to live and it worked. I forced my body to work again, rewiring the neuro pathways and rebuilding muscle fiber that SPS had stripped away from me. I finished the 2011 Boston marathon as part of the Genzyme Team with Phil Madeira, my guide runner, by my side. Since then, I have run in the 2012 and 2013 Boston marathons and will proudly wear the Genzyme team shirt in 2014.
Here is a short film on my story: http://vimeo.com/84169082
I am indebted to NORD and that is why I am running 28 marathons in 28 days during February, 2014, to raise funds for this great organization that brings hope into many people’s lives. Follow my progress on www.run-to-live.com.
NORD provided hope when all felt lost, filled a void from the isolation of living with a rare disorder. I can`t thank the people that support NORD or rare diseases enough. To fellow sufferers of SPS and other rare disorders, I hope you can find some peace. Good luck, Fight On!!!