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Re: Interview

It doesn't bother me at all, but I guess I'm used to having nicknames for my diseases (I inherited several genetic conditions). When I say I have SCID, people have a blank stare. But if I say I have the "bubble boy disease" they immediately think of the Seinfeld episode and understand that my immune system is totally messed up. When I say I have porphyria, even most doctors don't know what it is. But they recognize "vampire disease," especially if they saw the "House" episode about it.

So using a phrase that people have a frame of reference for saves a ton of explaining and even opens up the opportunity for an intelligent, educational conversation. I raised goats and think they're a hoot, so it I don't mind the comparison.

I respect your feelings and opinion, Tammy. Sorry the comparison offends you. I do get irritated about people exploiting the goats and scaring them on purpose so that they'll fall. So I tell people that it DOES hurt and that I hated going to birthday parties when I was little because if a balloon popped I'd be incapacitated. They laugh but they get it and are more considerate in the future.

Jan

Type of Myotonia: Thomsen's

Country: US