After nearly 15 years tracking the cultural shifts happening at the intersection of health and the internet, I know a few things.
#1 – don’t get between a parent and a piece of information he or she needs to make a decision about the health of a child.
#2 – from 28.8 modems to the latest smartphones, any piece of tech is going to turn into a medical device in the hands of an e-patient.
#3 – the most exciting trend I’ve seen, by far, is (…drum roll…) people talking with each other. No app, gadget, or site can match the ingenuity and sheer potential good that comes from communication between two or more people who share the same condition.
I learned all three of those lessons while spending time in communities of people living with rare diseases.
That’s why, when Rare Disease Day rolls around each year, I take a moment to say thank you to these amazing people who are, yes, extremely rare, but also incredibly typical. They have taught me that their concerns, strategies, and grit are universal.
Each time I dive down into a community, I come up with the same pearls, from Marfan, McCune-Albright, and Moebius to ALS and cancer. From diseases you’ve never heard of to others that make you shiver in recognition: these people love, live, strive, ask, and answer. They push for better drug discovery. They ask for access to their records. They track symptoms and MacGyver their way out of tight spots.
Spend a little time exploring the world of rare disease today. And say thank you. They’re making health care better for all of us.