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.
No never. I have small airways airways trapping disease, LAM or Lymphangioleiomyomatosis & asthma & am O2 dependent
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.
, do you think his (and your) illness was fairly represented? Did exposure on the show help bring you any understanding? - Warmly, Donna (Team Member) I have KFS Klippel Feil Syndrome which is characterized by cervical vertabre fusions and other anomalies that are often associated. My C1 is fused to my skull, C2-C3, and C6 or C7 is fused to T1 or T 2, depending on who is reading the X-ray, LoL! I also have fusions lower down and a tethered cord, which they just found out at 58. I'm now having random loss of hand/arm control and hip/leg control. It is degenerative and sometimes (for now?), it is genetic but I don't carry any of the 3 known genes associated with KFS. Which means I have to hope I have impressed that my children should not risk continuing our lineage. I love my kids but I probably wouldn't have risked it, had I known. Grandkids were my biggest dream! Now, they are my greatest fear, but still dream?
