What are the odds?
Since not a single person we've told has ever heard of this disease or knows someone who has it, we've been looking for a statistic. I'm not sure why -- perhaps to torture ourselves a bit more.
I found this site which lists various rare diseases and their prevalence:
http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_decreasing_prevalence_or_cases.pdf
Coat's is listed as 2 in 100,000.
If the US population is about 305,000,000, at 1:50,000 there are about 75 new cases each year. Not having been a math major, this may not be an exact calculation, but shows you how uncommon this is.
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