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.
I am short bowel syndrome and I don’t think I’ve ever seen it advertised anywhere
, I bet you're right. I do wonder if any of the bajillion medical shows on TV have ever had an episode about short bowel syndrome. Remember the show "House", where almost every case was solved by the eccentric, acerbic Dr. House and the patients always had some really rare condition or incredibly rare complication/presentation? Maybe that show touched on it. Still, I know representation can be misleading, especially on those medical dramas.
Best, Erin, Team Member.
I have Anderson tawil syndrome with hypokalemic periodic paralysis. Very recently I saw a medical drama that featured someone with my case. It was powerful to see someone with our condition represented finally because it is very, very rare, it was also a little bit funny to see a diagnosis wrapped up in less than an hour if only it worked like that for all of us. But I thought they did an excellent job representing the disease itself and how it could have been missed.
, that is awesome! Feeling represented is very validating! I'm glad to hear thaty did a good job of representing how it presents. And the fact that they choose to cover a rare disease, it brings (hopefully) a light to the struggles rare warriors suffer in trying to understand what is happening. Thank you for sharing that! - Warmly, Donna (Team Member)
I have syringomyelia. I don't remember seeing anything about it. My syrinx is stable so I don't think it bothers me much except for the back pain but I could be worse than I am.
, I have heard about it, oddly enough! I'm glad to know that you are stable. Hopefully, the pain is controllable. Does it impinge on your movement or activity very much? - Warmly, Donna (Team Member)
No never. I have small airways airways trapping disease, LAM or Lymphangioleiomyomatosis & asthma & am O2 dependent
