Friday, 15 July 2011
A Doctor said it, so it must be true.
Ian had his appointment with his surgeon about the options for his knee. As he has a tear in the ligament, he is awaiting a date for an operation. They wont know the full extent of the damage until they get in there with the camera, and this will be the difference between getting back to normal quickly or not.
All was going well until he said something that really ruffled my feathers. He asked if there were any dates we had plans for in case a cancellation occurred. Both Ian and I said no unless our daughter was to be hospitalised, which would be something we couldn't plan for anyway.
He asked what was wrong with her and Ian explained she had Cystic Fibrosis. He turned to face us at this point and said that "Cystic Fibrosis is a very different disease now to how it used to be" to which Ian and I both agreed. He then continued to say that most people are living a normal life span. I replied by saying hopefully, although I wouldn't say 37 was a 'normal' life span. He continued talking and this is what really ruffled me,
"All Cystic Fibrosis is these days is a couple of niggly chest infections, it's manageable and not the worry it once was".
Excuse me? Manageable, maybe to an extent but not a worry? NOT A WORRY?
I wish that all Sophie had to deal with were a few niggly chest infections, that would be AWESOME. Can someone tell me which Cystic Fibrosis this is, I'd like to trade now.
Luckily Ian's consult was over at this point otherwise I may have had one of my 'speech' moments. They don't happen very often as I'm not a real believer in being negative and ramming information down peoples throats but I came very close at that moment.
It wasn't that he had little knowledge, it was the fact that he was a doctor who was having a verbal diarrhoea moment and the 'facts' that he was quoting were quite flawed. I'd love to find one family affected by Cystic Fibrosis that can honestly say it isn't a worry and know their secret.
Normally I wouldn't waste energy on this kind of thing but I guess it's because we are desperately trying to raise awareness to keep the money flowing in for the Gene Therapy trials, and for a medical professional to spout such utter nonsense just felt like a huge slap in the face.
If this is what the health professionals think, what hope have we of convincing the rest of the public that Cystic Fibrosis is a SERIOUS and WORRYING disease which still takes young lives?
Needless to say, we left quite sharpish.
On a brighter note, this blog turned one last week! Yes I have officially been blogging for a year and must thank everyone who bothers to read my ramblings and actually come back for more! THANK YOU.
I will leave you with a pile of pictures of stink bomb having fun in the sun :)
Sophie launching a ball at my dad..
Sophie cheering because she managed to hit him with the ball..
Remember the bean plant Sophie came home from pre-school with? Well this is it!!
Look, it even grew beans, she's so proud of herself...
A few minutes time out to have her milk feed via her Mic-key button...
Seriously this girl never stops running...
Playing a tune on her new Thomas guitar...
Take care all and please read my previous post and help out the CF community if you can. Many thanks.