I have been so interested In the Instagram for the trust they had a take over today which I found inspiring however without being negative I think it is a bit difficult for people who aren’t as healthy as her, I Remember pre transplant how much it got me down to see other cfs withour transplant have the luxury of working and being happy to be so fit and healthy when there is no matter what I did I could never be like that! I find sometimes with the trust they are so scared to show the parents the reality of cf and how bad it gets, awareness for cf is crucial and people need to see how hard it gets and can be for so many.
Get someone with 20% lung function waiting for a transplant, someone who would love to exercise without oxygen and jump on the gym bandwagon but that’s just not the case!
Cf can be so missunserstood anyway I think it needs to be real!
Just my opinion maybe they will have someone who’s in a wheelchair on a bipap machine waiting for lungs unable to eat they feel so sick and going blue when they talk, or maybe they will continue to show cf as a popular lovely illness which is not as bad so it protects the parents of young kids!
Fantasy land in my opinion x