In 2006, Shane J. discovered he had a broken back, the cause of which was a medical mystery. At the same time, he was suddenly racked with severe muscle spasms and seizures. Shane endured a life of pain for 18 months until he was diagnosed with Stiff-Person Syndrome (SPS)–a rare neurological disorder. There is no cure and the cause is not known. The resilience, determination, and resolve of rare disease patients go unmatched. Working through intense pain, Shane fought back against his disease and broke through SPS barrier after barrier until he decided to fulfill a lifelong dream and run the Boston Marathon.
Read as Shane describes the support he found through NORD and his mission to continue his fight against SPS and the fight against rare diseases.
When I first discovered NORD, I was desperate, frightened and fighting for my life. I found NORD as I searched for online support groups for Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. 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.
Frightened that my back would break again from SPS and no longer able to work, I felt that SPS was taking my life away. I seemed to have 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 diagnosed 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, where I live. I spoke with a NORD staff member 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.
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.
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.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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