Sunday, 13 March 2011

Maybe one day.

[Slightly behind on the times here as the blog has been a little bit neglected but I still wanted to write about it]

I've always been a bit pessimistic where a cure for CF has been concerned. I know a lot of people hope and get excited whenever a new drug comes along but frankly I don't want to waste my energy or have false hope on something that might not even work. I don't go about searching for articles about potential cures and drugs etc, mainly as they're just really really long reports or boring articles that can't hold my attention, and I don't have have a degree in biology and all that fun stuff that would give me even half of the knowledge to understand half the stuff they say, although I do understand more than the average person seeing as I'm surrounded by doctors, hospital staff, technical terms, drug names, etc all the time. It wasn't that long ago when I had a conversation to Gem about this sort of thing; one of the main reasons why Cfs reach out to other Cfs is to be able to talk about medical stuff casually as it's a huge part of your day, and not have to stop and explain what every single thing means.

My whole point to this was, that there is actually a drug in the pipeline, called VX770, which may well actually progress to something good for once! Not just a drug that treats the odd infection or symptoms and so on, but one that digs down to the base of the problem, fixing the CFTR gene and all it's issues it seems to have with us trying to live a normal life. It's explained best Here in a post on Gemma's blog (Her daughter Sophie has CF). It's a pretty good explanation that explains everything really well without having to crack out the medical dictionary!

But like Gemma said, whilst this is a major positive step forward, I agree with what she says when she doubts that we'll see a proper cure in our life time. But all the same, it'll be cool if they do get this current drug all the way through the trails and available to Cfs everywhere, and even cooler if they got the one targeting the DF508 mutation being just as successful too. Not that I'm biased. Well, I am, cos my mutations are DDF508 (Common as hell :D) but it would also mean good news for a hell of a lot of other Cfs b/c of how common the DF508 mutation is, compared to the G551D mutation which is only about 4% of the Cf population.

I'm not holding my breath though (despite the fact that I can't anyway >.<) But I'm hoping to keep myself well enough, long enough for a drug like that to come about, which could possibly hold off the big scary decisions that I have to make one day, just a bit longer.

P.s. A beautifully written entry was posted on Lauren's blog, by her mum. It was honestly the hardest thing I've ever read as it made things a tidgy bit more real, and it means that the past 3 1/2 weeks really did happen. I will find acceptance one day, I just have no idea when that'll be, as I still fall apart as much as I ever did when I found out the night she passed away. Her mum mentioned how Loz was worried about being forgotten (and it was on her bucket list to 'Be remembered'). She should never have worried about that in the slightest b/c I can promise her than anyone who knew her will remember the impression she made on them.


Gem said...

Lauren's mum's entry on Loz's blog made me cry again =/ I know what you mean about the cure though. I don't have a bloody clue what will happen with people like me that only have 1 identified gene!

Eeeeep! We WILL keep ourselves well so we can see this day that allows us to put off decisions!

Big love! xxxxxx

Gemma said...

Thank you so much for linking to my post, I'm glad it made sense and thought it was useful.

Just my two pence worth :)

The post laurens mum wrote made me cry too, it was beautifully written. Lauren will be missed by a lot of people, not many people have her natural niceness and humour.
I hope you and gem are able to help each other through the grief as I know you have both being seriously devastated by loz's passing.
Take care and I know i don't post often but I read all the time xx

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