Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one.
Having a rare disease means strangers telling you what your rare disease means, even though they’ve never lived or worked with it themselves. It means existing with stereotypes like, “Only kids are diagnosed with CF.” (Yes, we are born with it, but some are diagnosed as late as their 70s). Or, “You can’t live past 17.” (Again, some patients are in their 70s.) And on and on.