I had lunch on Thursday with a very special young man.Â At only 20 years of age, Christian recently had stents implanted around his heart to unclog two major arteries.Â Christian is inflicted with familial hypercholesterolemia (FH); a genetic disorder that led to early childhood Â heart disease. Â Christian was the patient partner of Dan during the 2012 Boston Marathon.Â You can see and hear of his and the teamâ€™s experiences in a video on the home page at genzyme.com.Â
Christian had with him some before and after photos detailing the significant expansion of his arteries with the placement of the stents.Â He wrote in a previous post â€œItâ€™s hard to imagine that two years ago I was running track, playing soccer, basketball, tennis, and marching band, and now I canâ€™t even walk up a flight of stairs without getting windedâ€.Â He described how the pictures have really given him some insight to why he has been struggling physically for the past few years.Â He is awaiting clearance from his doctor to start being more active.Â You could see in his body language and hear in his voice the excitement of a potential new beginning.Â Â Â
Over the last 6 years, I have learned the love of running and endurance training and have made this a large part of my life.Â Â As you may expect, racing whether running, swimming or cycling breeds interest and discussion with family members, friends, and fellow employees.Â There is always a sharing of individual experiences, goals or passions as they pertain to the respective sport or race.Â It is interesting how frequently I hear people sayÂ â€œitâ€™s just a â€¦.â€; itâ€™s just a 5K, itâ€™s just a sprint triathlon, itâ€™s just a Â¼ mile swim, Â or itâ€™s just a mile hike; seemingly minimizing their accomplishment.Â Â Â I always say â€˜stop saying itâ€™s just aâ€¦.â€™.Â Accomplishments need to be recognized with pride, whether it is your first mile run, your first 5 laps in the pool without stopping, or your first flight of stairs without being winded.Â Â Â We all place limits on ourselves on what we can individually accomplish.Â Â There will always be someone who has run farther or climbed higher; even they started somewhere.Â Take pride in your accomplishment without comparing it with that of someone else.
At lunch Christian and I talked about â€˜Itâ€™s just a â€¦â€™, and the importance of recognizing oneâ€™s own accomplishments as he prepares for what’s next.Â Since Thursday, I have found myself thinking a lot about this conversation.Â I think it has helped me answer some of my own questions.Â I am not sure which direction Christian will go and what he will pursue but I am certain he will give it his all as he has with FH awareness.Â Â Good luck Christian and thanks for being such a big part of our team.
Thanks for your interest in rare disease patients! I hope the joint employee/partner program cont’s next yr as I have talked to Dan and interested in partnering! 🙂
I love hearing about your other patients especially the adults. sometimes it’s nice knowing there are others who balance their disorder and their life.