Saturday, April 14, 2007

ONE for the parents!

OK, OK, I know I said no more depressing-ish type posts, which this isn't. But it IS about CF, so look away now! This one is more for the parents of lil ones with CF or PWCF themselves.

Every year the Cystic Fibrosis Association of Ireland holds their annual conference. This year it was held in Galway and last night while browsing I came across the links to their broadcasts (which are of particular interest to Parents Of LWCF in my opinion and worth a look!). Click Here For the Links

Rosie Barnes of CF Trust (UK CF association) spoke about the UK gene therapy programme.

Dr. Lee from Leeds talked about 'Ways to reach adulthood without chronic Pseudomonas aeruginosa'.

There was a brief talk (brief because I skipped it) on Nutrition and I think on CF Emerging complications of medical treatment (diabetes etc). In fact, you can view them all by just going to the link. I'm too lazy to type.

The conference was chaired by 'my very own' former Consultant, Dr Gallagher who looked after me pre-transplant. It was his opening speech that struck me when he said something (along the lines of):

" the early eighties, when most of the patients were in their early twenties or before that, and there were very few older then that. And those people who were 18 to 20 were almost always in hospital, all the time with a very poor outlook..."

When I heard that, I thought, 'Gosh, how awful'. And then it hit me. I WAS one of those 18-20 year olds, all the time in hospital, with a poor outlook. I never stopped to consider it. I was one of them. The revelation (which was staring me in the face for years I might add) came as a bit of a shock. I just never really thought of myself like that.

Anyway, I suggest you take a small peek at the links if you're interested. The first clip doesn't show video for a few seconds, and the great thing is, you can fast-forward the boring parts. And let's admit it, anything with the word 'conference' in it, is bound to be boring.

And in case you don't bother listening, something nice was: "..We now have a situation in Ireland, where half of the Cystic Fibrosis population are adults....I can think of no occupation, vocation in Ireland that does not have one person with CF in it and that will change more. So there is HUGE hope for the future."

The LINK again: HERE!!