If you’ve read Outliers, you likely already know what I’m alluding to with the title of this post. Malcom Gladwell, the journalist and best-selling author, refers to what he calls the “10,000 hour rule.” Simply, if you practice something for about 10,000 hours, you’re likely going to be a much greater success at it than the average person — masterful even. In my life, I’ve found this to be quite true with music, design, school, language and well, perhaps most importantly, dealing with illness.
Now I’m not complaining, but having any kind of chronic illness is a day in, day out affair — and I’ve had Crohn’s disease since 2001, so I’ve racked up nearly 96,000 hours of practice there. I’ve had my fun with vasculitis (Wegener’s) since 2008 — that’s approximately 43,000 hours. Needless to say, I am an expert in my own personal course with these diseases because I’ve been there for every hour of practice. I’m extremely lucky to have a medical team that fully respects not only the above, but the importance of my role in the care that I receive (thank you UCSF, you guys are amazing). There are so many patients and families who aren’t so lucky though.
Meet Christy. Her daughter Signe was born with M-CM — an extremely rare condition that Christy recognized and correctly diagnosed (following a misdiagnosis) because as Signe’s mom, she is an expert on her daughter. Check out Christy’s piece in honor of Open Access Week around inserting herself — and the brilliant families in the network that’s been created around M-CM — into the science of the disease and the importance of open research online. Talk about human-centered design… the world needs more Christy’s as far as I’m concerned.
