Have you ever seen your rare disease represented in the media?
How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like to see and what effect you hope it would have on viewers.
Twice I've seen Familial Adenomatous Polyposis on fictional medical shows! I believe it was House and Chicago Med. What was even cooler about it though was my MIL caught it, recognized it and even recorded the brief section of it on Chicago Med and told me/sent it to me. I was so impressed by her!
Yes, unfortunately, there was a guy on Married At First Sight. I didn't see the show but I did see him on Ridiculousness. Apparently, he was kind of a jerk. Of course, if he is like me, he is in almost constant pain.
Wow... interesting! I have never seen anyone on shows or in movies with my rare diseases: MAC Lung and Cystic Fibrosis.
Do you want to share the name of your rare disease with us?
Gina Miller,
Team Member
