Message Boards for the CF Trust

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solly

Posts: 11
From: Brighton
Registered: 08-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 15:07

Reply

I wish them all the best. I hope this raises awareness - my personal hope is that the Government finally listens to the CF Trust after 30 years of campaigning and puts CF on the free prescriptions list! It may take a famous couple's personal tragedy to get things moving.

solly

Posts: 11
From: Brighton
Registered: 08-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 15:14

Reply

Personally, I don't feel it's 'capitalisation' in an insensitive way. We have all faced the difficulties of life with CF, and while wishing the Browns all the best as we would any other family affected, more publicity for the condition is desirable so that the long-elusive cure can be tracked down. The sad reality is that this cure is no only a matter of time, but of money. It's not insensitive to wish an end to all our sufferings, including the Browns'.

Anders

Posts: 47
From: Glasgow
Registered: 05-Jun-2004

Re: Gordon Brown
Posted: 30-Nov-2006 15:23

Reply

I think Oli is just suggesting that we take a breath, reflect and ponder before we post - that's all.

Do unto others as you would have others do unto you...and that.

take care

Anders

solly

Posts: 11
From: Brighton
Registered: 08-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 16:04

Reply

Yeah, it's an emotive issue...

Thanks Anders.

Bill H

Posts: 11
From: Scotland
Registered: 30-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 18:57

Reply

The fact that I advocate maximum use of this sad news story does not detract from my sympathy with a family in this situation. Nor does it suggest that I am doing anything "unto" the Browns.

What I was trying to say is don't feel guilty about using this media storm and the no doubt infrequent blips of "caring devoted parents inside Downing Street" stories that will run whilst Mr Brown is PM. CFT nor CF sufferers should not feel that taking the media initiative to brief a currently-interested nation is in any way detrimental to the Browns or their privacy or the level of sympathy they deserve about this.

simba

Posts: 9
Registered: 25-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 19:15

Reply

I agree with Bill H and would just like to say that I think it's very important that we are all able to post our views on this forum, whatever they are, without feeling we will be criticised.

We all have cf and this is an adults board for adults to comment about life with cf. Our lives differ, the impact cf has on our lives differs and so do our views.

Obviously our views will be different to the parents and families who are coming to terms with new diagnoses but this forum isn't for them. I am looking at it from the point of view of an adult with cf, on a forum for adults with cf, is that so bad?

stuartgers

Posts: 202
From: lanark,scotland
Registered: 26-Mar-2004

Re: Gordon Brown
Posted: 30-Nov-2006 20:13

Reply

The one thing that has been getting me about all the publicity etc is that life as a pwcf apparantly ends at the age of 31, whilst they do say cf sufferers have an "average" lifespan of 31 years it does kinda suggest that there is no life beyond that age.

Personally, I'm delighted to be alive and well at 37(38 in Feb.) but I'm sure I'm not the only more mature pwcf here that will feel slighlty annoyed by this particular "fact" that is being used as part of the "what is cf??" coverage.

Maybe I'm just turning into a grumpy old man

Daisy!

Posts: 40
Registered: 06-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 20:31

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Whilst it's great that it's possible for many people with CF to live healthily beyond the "31 years" mark, it's sadly a fact that many people do not. I'm 18 and on the tx list and know that I probably won't make this. I think that the publicity surrounding CF today, well what I've seen, has been quite positive. I suppose because the story was surrounding a baby with CF, there was no need to talk about it's complications and transplants etc but personally, and this is just my opinion and don't shoot the messenger, I don't think it has been brilliantly portrayed in most programmes etc, and not showing how serious it really is. But I'm sure that parents etc are happy with the positive attitude...it's just at the stage I'm at, I know today's talk isn't always reality. x

bumble

Posts: 30
Registered: 06-Nov-2006

Re: Gordon Brown
Posted: 30-Nov-2006 21:32

Reply

I agree stuart, I don't like all these statistics they are giving out on the news. I get annoyed with all the so called 'facts' about CF, half of which are incorrect. Sorry if this makes me a grumpy old woman

Merlin

Posts: 46
From: North East
Registered: 07-Nov-2006

Re: Gordon Brown
Posted: 01-Dec-2006 05:53

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FATMAN,,i could'nt agree more.
At some stage we have all experienced what you have described. For 11 yrs i was treated for coeliac disease for my digestion problems and bronchitis for my respiratory problems !!
The f'ckin incompetence of my local hospital was something to behold,untill i transferred thanks to the cf trust.Mind you this was the 1960's. My poor parents were shot to hell nerve wise.God knows how i made it past my teens !
But the Browns merely for being who they are will not experience this,,,FACT !
And yes the CF trust should capitalise on this indirectly.
However they and the little lad have my deepest sympathy,and i wish them all the best.
Rant over,,sorry.