Today, my TEDMED talk, viewable on both TEDMED’s and TED’s websites, reached one million views. I am stunned. How can this be?
My questioning is not rooted in false humility. I am not questioning that what I said is interesting to a million or so people. After all, I spoke about the millions of people who suffer health problems on this planet. I spoke from my heart. I spoke with the support of my tribe, and hence had the chance to tell some truth.
I am surprised, nevertheless. I am a warrior in the health space because of a rare disease that affects my two children. It is rare. Very rare. No healthcare provider ever knows anything about it. The 4,160 people affected by PXE we have found worldwide all face bewilderment when they sit in front of their doctor or nurse. “You have what? I have never heard of it.” And so people with PXE, and any one of the 7000 rare diseases, live in a world where we feel very alone. We celebrate giving a talk to 10 doctors, or a grand rounds for 100 clinicians. We are excited when a handful of people are interested. One million people? No way.