Cystic Fibrosis

[Trouble]

Hey there everyone.
I was just wondering, how many people know about Cystic Fibrois & how many support it.? The reason I ask is that I suffer from it (& I know someone else on here that does) and 65 roses day has been & gone (27th May), but I still want to raise peoples awareness of it.

Cystic Fibrosis is a genetic lung disorder that affects 1 in every 4 babies born.
Atm there is no cure for it, but hopefully in my lifetime there will be, with everyones help of course.

Well enough of my rambling on,
Thanks for reading this

Trouble:twisted:

 

[Jen]

1 in 4? i didn't think it was that high, that really hammers home the need for research. Hope you are well

 

[ytamarin]

Yes, my housemate has CF. But 1 in 4 doesn't sound right?

 

[Sdaji]

I think you'll find it's considerably less than one in four.

We learned a lot about it in genetics at uni, it's one of the main areas of gene therapy research, very interesting, hopefully the research will progress quickly.

 

[Trouble]

I just got this off Cystic Fibrosis Aus

Cystic Fibrosis (CF) is an inherited recessive genetic condition. Amongst people of Caucasian ancestry 1 in 25 are genetic carriers for CF, usually without knowing it.
If a baby is born with CF, it means that both parents are genetic carriers for CF. However, even if they are genetic carriers, there is no guarantee that the child will be born with CF.
If two people are genetic carriers for CF and they have a child there is (with every pregnancy):

• <LI class=bodycopy>A 1 out of 4 (25%) chance that the child will have CF <LI class=bodycopy>A 2 out of 4 (50%) chance that the child will be a genetic carrier for CF
• A 1 out of 4 (25%) chance that the child will not have CF and will not be a genetic carrier for CF.

 

[Trouble]

bump

 

[Sdaji]

If both parents are carriers (het for Cystic Fibrosis), each of their children will have a one in four chance of having the disease. For the entire population, it is one in several hundred.

 

[swingonthespiral]

Thanks for putting this up Trouble.

I find the awareness for CF considerably less than heavily advertised (and rightfully so dont get me wrong) diseases/conditions.

The fact is people with CF suffer from day 1 and will NEVER experience a normal life. Unfortunately to be very blunt they are drowning and rotting thier lungs in thier own mucus.... not pretty huh....

How many people take walking around the shops for granted? For some CF suffers (during different severities of the disease) this is a very hard task.

Yes there are treatments, but they only treat the secondary infections, not the actual disease.

Awareness aids in research.

 

[Trouble]

Thats great cass.
That is so true, I'm only 15, and I have to go on the tansplant list for double lungs.
and it doesnt only affect the lungs, also the repoductive organs and the digestive track.
96% of C.F males cannot reproduce. 50 50 for females

 

[swingonthespiral]

Yep i know all about Andy's digestive problems!!! :lol: hes quite proud of them.

Andy's sister died 6yrs ago when she was 18 of the same disease.

Unfortunately most CF suffers aren't given much of a chance out of thier teens.

Also its always up and down..... one week no infections..... the next week the common cold could put you in hospital on life support..... its not a nice way to live

 

[reptilegirl_jordan]

iv heard of it one of my good mate has it,i love her alot and hope she stays well,it sound really crapy

 

[ytamarin]

My housemate makes it seem like it's everyone else who has the weakness, not him. He's currently overseas and just attempted to climb Mt Kili! Unfortunately due to a chest infection he didn't make it all the way up but his ambitious attitude is really inspiring.

 

[swingonthespiral]

Andy has gone through a phase of denial...

Before I came along he didn't attend any of his clinics, appointments, take any of his meds etc..... I think long term suffers of any disease sometimes just think its better to ignore it for as long as you can.

At least your housemate is out and living the best he can and doing things that people wouldnt associate with a person being so sick.

As you said it is very inspirational.

 

[PhilK]

Is it more common in girls?

 

[swingonthespiral]

Not that I am aware of.....

If anybody could shed some light that would be great...

 

[Krystal]

My mum had 1 brother who died when he was a baby (before she was born) and another who died when he was 14, he was really sick and I remember mum and grandma telling me stories about it Grandma and Grandad lost 2 out of 6 children I wasn't aware they had a day to support it, I'm not sure if mum knows either. Is it the 27th of May every year?

 

[Trouble]

That sucks Krystal
I think it is more common in girls, & I think its 27th May each year.

 

[tempest]

I have a good friend on here that also suffers from CF. I didn't know much about it before they told me they had it and when I found out I did some research so I knew what it was about. I have to say that this person is someone I admire greatly, they haven't let CF hold them back. They spent the beginning of this year incredibly sick and in hospital for many weeks, yet they have worked really hard to improve their health and they are doing so much better. It's people like this person that have taught me that we should never take life for granted.

Cass, I admire you greatly for standing by Andy. It is something that would send lesser people running.

Trouble, thank you for bringing the issue up and raising awareness of it.

 

[Krystal]

Thanks for that, I will have to tell mum so she knows as well.

 

[Trouble]

Thanks everone for their support
I never knew that this many people knew about C.F.
Thanks again