Writing Letters for Medical Mystery TV Show?

[NickyNikkiNicci]

I was thinking... what if we all started writing emails/letters to Medical Mysteries on ABC (is this still on?), or some other similar TV show. You think they'd pay any attention? If we could get this on TV, you'd think doctors would start paying more attention. Is it a strange enough condition to make it on there (it's not exactly as entertaining as the whole "wolfman" thing)?Maybe I'm just dreaming... I'm willing to do anything at this point.

 

[SirTrouserz]

I can really relate to how you feel Nicole. That's exactly how I felt about a year ago when I developed BCFS. There is a little research done on this condition and it mainly has to do with autoimmunity, but that's about all I can find. Some neurologists are familiar with this condition, the causes and treatments, but not all of them. That's one of the things that can make having this condition frustrating sometimes. This is a rare condition by all accounts and it's benign, so we don't get too much press. I always thought it might be great if we could get bios published in a magazine somewhere, but I'm not sure which one.