Rare Disease Day takes place on the last day of February to raise awareness of rare diseases and their impact on real people’s daily lives. In 2012, a relay style torch run, linking the work sites of Genzyme in Massachusetts, was started to draw attention to this important day. The international theme for 2013 was “Rare Disorders without Borders” and with the relay now growing to involve other countries, including cycling in the Netherlands and the first leg of the relay starting in Waterford, Ireland, the global theme was truly fitting.
As part of the day’s events, a patient speaker was invited to share their story of living with a rare disease. That’s when I had the chance to meet Emma Rooney, National Gaucher Foundation of Canada representative, who spoke to employees in Waltham, where I work for Genzyme as a scientist. It was amazing to hear firsthand Emma’s story of growing-up with Gaucher disease and how she’s encouraging others, through the My Normal project, to share their own childhood stories of having a rare condition.
Being a proud Canadian myself, I was excited to connect with our Canadian visitor before her talk. It was neat to find-out that Emma’s also a keen runner! Later we came to realize how we are both training for races taking place on the very same day in Germany! Having made this connection, it was easy to stay in touch by email with regular updates on how our training was progressing.
On Sunday, September 29th, Emma will be running the Einstein-Half-Marathon and I will be participating in the historic Berlin Marathon, where after the events at Boston, I’m most anticipating reaching that finish line! With the wheels in motion we also started making plans to meet up after our shared race day. I’m really looking forward to rendezvousing with Emma in Germany, where we can in-person share the stories of our running races and rest our feet a little by hiking in the Allgäu Mountains.
Now I’ll hand it over to Emma for some of her “running thoughts”. Here’s what she has to say about this running connection: So I’m Emma and I can tell you that meeting some of the members of the Boston Marathon Team at Genzyme and taking part in this year’s Rare Disease Day Relay refocused my energy and enthusiasm for running. What runner wouldn’t be left inspired after having the chance to carry a torch in an Olympic style relay race along the Charles River? It wasn’t that I’d never ran before or didn’t already consider myself to be a runner, but rather it was the first time I seriously reflected on what it meant to me to run with a rare disease. In my case, Gaucher, a lysosomal storage disorder that as a child and teen had often left me with serious bone pain and feeling overly exhausted when I desperately tried to keep-up with my peers in running.
The story continues with a lot of change taking place in my life since launching the My Normal project and being in Boston in February. Literally 48 hours later, I moved to a new continent, landing in Ulm Germany, the birthplace of Albert Einstein, and then promptly celebrated my 30th Birthday! I wouldn’t have managed the major life transition without running to keep me sane. My route now was following the Danube River for countless kilometres, the surrounding nature helping me to regain my sense of peace. Along the way I kept the promise to myself to maintain the positive spirit of the Rare Disease Day Relay.
The biggest lesson that’s come from the long training for a half-marathon and a marathon is learning how to listen to my body. Living with a rare disease has often meant working hard to ignore what my body is telling me, being in a constant state of pretending that I feel fine and don’t have any pain. While this coping strategy has always seemed to embody my “mind over matter” approach to life, it came as a surprise to find out that I could actually go further (and faster) by becoming more self-aware (not just ignoring my body’s signs). I had to work extra hard to find the difficult balance between pushing my limits and preventing catastrophe by going that step too far. This sometimes meant not sticking mindlessly to my training plan while at the same time not slacking either. In the process I discovered the true joy that comes from being able to run at a range of speeds, including the satisfaction of letting go and allowing myself to walk at times, when necessary to restore my energy and give myself the chance to enjoy the surroundings of my new home.
I’m beyond grateful to be on my current running track but I don’t want to lose sight that this would not always have been possible for someone like me. My running journey, in spite of Gaucher disease, is a reality because of the coming together of the following key conditions:
1- The on-going love of family and friends that keeps me well
2- A lot of training!
3- Life changing advancements in medical science since I was born and originally diagnosed with Gaucher at age three
At race time on Sunday I will definitely be sending my good vibes across Germany to my virtual running buddy Andrew. I hope that you will consider joining us with your good energy, connecting a global community running for rare diseases!
In Germany, on Sunday, September 29th, Andrew will be running the Berlin Marathon and Emma the Einstein-Half-Marathon in her new German home. Three weeks later, on October 20th, Emma will attempt her first full marathon in Toronto, Canada (update to come). October also marks Gaucher Awareness Month in North America.