Having a Rare Disease Is a Lot Harder Than You Think

Having a Rare Disease Is a Lot Harder Than You Think

288507

Having a Rare Disease Is a Lot Harder Than You Think

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…

You must be logged in to read/download the full post.