Fred Oliver - Legend
Well-known member
- Thread starter
- #41
thank you
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petition that needs signing on behalf of Cystic Fibrosis
- Thread starter Fred Oliver - Legend
- Start date
thank you
Fred Oliver - Legend
Well-known member
- Thread starter
- #42
thank you
glasfryn
cleaning up cat sick
gladly done
Cold Gettin Dumb
Active member
- Jan 31, 2013
- 462
Just did it and shared on my Facebook too.
A good friend kept it secret from almost everyone in our social circle, that he had CF. He was the most positive person you could ever meet. He died just before the spring 2014, having gone 12 years further than his projected lifespan, reaching 42.
You'd never hear him complain in anyway about anything. True strength of character.
A good friend kept it secret from almost everyone in our social circle, that he had CF. He was the most positive person you could ever meet. He died just before the spring 2014, having gone 12 years further than his projected lifespan, reaching 42.
You'd never hear him complain in anyway about anything. True strength of character.
spongy
Well-known member
A couple of my best friends have a daughter with CF, came as a massive shock and hurt everyone a lot. Their daughter spent almost the first 9months of her life in the Alex having operations regularly to keep her alive. (They even met Gus and a lot of the team when they did a visit once). Having only had my first child myself nearly 6 months ago CF was something I'd never even have given a second thought and when we found out we were expecting CF (along with Downs) were one of the first things to come into my thoughts.
I've signed and shared on my FB page, a lot of my friends who aren't on here will follow along and sign too��
I've signed and shared on my FB page, a lot of my friends who aren't on here will follow along and sign too��
Fred Oliver - Legend
Well-known member
- Thread starter
- #47
thank you to all who have signed and shared, and to all cf'ers, keep fighting and breath easy. xx
Pevenseagull
Anti-greed coalition
- Jul 20, 2003
- 19,613
Signed and shared
Lyndhurst 14
Well-known member
- Jan 16, 2008
- 5,128
Signed. Sadly my niece recently died of CF at the age of 35. When she was born I think life expectancy was only about 16 so it’s good to see the strides that were made by the medical profession during her lifetime, and hopefully this will continue to improve. She was another one who never complained and lived her life to the full and achieved all her ambitions including the main ones of getting married and qualifying as a doctor. I remember staying at my sisters and seeing how she had to have her chest pummeled daily and the amount of medication she had to take. She made us all very proud of her. Good luck to you and your son.
My own adorable 5 year old niece also has it. I pray she gets to experience everything of life. I honestly try not to think about it. It's heartbreaking.
Pevenseagull
Anti-greed coalition
- Jul 20, 2003
- 19,613
some excellent news regarding innovations in gene therapy doing the rounds today giving a lot of hope for those directly and indirectly effected by CF.
As an aside I have CF and am 44 years old, I've been very lucky compared to many others in the severity of my symptoms. Although I'm not going to be completing any half marathons anytime soon I'm still able to lead a pretty much normal life .... and I did manage the London to Brighton bike ride a couple of times 10 years ago. As I say VERY lucky.
The key modern available treatments ( i.e. pulmozyme) and nutritional supplements make a huge difference in living with CF and the new gene therapy developments are massively encouraging.
Whilst I obviously have no idea of the severity of your nieces condition you may be able to take some solace from knowing that this appears to be something of a golden age in the development of dealing with this cruel illness that will hopefully result in her living a long and fulfilling life.
back to the original topic of prescription charges, a PPC costs a bit over £100 a year if you earn over £16K a year and is the best use of £100 you can make if like me you have a dozen or more prescriptions each month although I'm not particularly happy about effectively being taxed for having faulty genes.
Seasidesage
New member
Done. Disgusted that we as a nation allow these poor people to pick up their prescription charges. Morally indefensible IMO
Pevenseagull
Anti-greed coalition
- Jul 20, 2003
- 19,613
Postman Pat
Well-known member
Done.
Good luck.
Good luck.
I read about it earlier, in the paper. Cheers.
Early doors, but very promising. Let's hope thye can fund further, larger scale trials as soon as possible.
My neice is a lovely, happy little girl, who gets on with it. If you didn't know she was suffering, you wouldn't know. Bless her, and you Pev, and everyone else.
Signed.
As always, [MENTION=12486]Husty[/MENTION] - what a ****ing prick
As always, [MENTION=12486]Husty[/MENTION] - what a ****ing prick
Pevenseagull
Anti-greed coalition
- Jul 20, 2003
- 19,613
I should have used some punctuation in my post yesterday. I was somewhat excited.
