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Cystic Fibrosis

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Since changing my avatar to the CF Trust Logo I've had three Members contact me because they either have CF or they know someone with CF. I just wondered how many HUKD Members have or know someone wi… Read More
dinosteveus Avatar
9y, 10m agoPosted 9 years, 10 months ago
Since changing my avatar to the CF Trust Logo I've had three Members contact me because they either have CF or they know someone with CF.
I just wondered how many HUKD Members have or know someone with CF.


[U What causes Cystic Fibrosis?

Cystic Fibrosis is caused by a single faulty gene that controls the movement of salt in the body.
In people with Cystic Fibrosis, the internal organs become clogged with thick, sticky mucus resulting in infections and inflammation making it hard to breathe and digest food.
For a baby to be born with Cystic Fibrosis, both parents must be carriers of the faulty CF gene. A baby born to two carriers has a one in four chance of having Cystic Fibrosis.

[U Treatment of Cystic Fibrosis

Cystic Fibrosis is a multi-system disease. The Cystic Fibrosis Trust recommends the best care for people with CF is at a specialist CF centre by the multidisciplinary team of doctors, nurses and allied health professionals.
The different ways Cystic Fibrosis is treated can be found in the following sections:
http://www.cftrust.org.uk/aboutcf/livingwithcf/physio/ [U Physiotherapy - to help clear the lungs of mucus, which attracts infection
http://www.cftrust.org.uk/aboutcf/livingwithcf/exercise/ [U Exercise - beneficial as a form of physiotherapy and for general health
http://www.cftrust.org.uk/aboutcf/livingwithcf/medication/ [U Medication - the different inhaled and intravenous drugs taken to clear mucus and fight infections
http://www.cftrust.org.uk/aboutcf/livingwithcf/nutrition/ [U Nutrition - enzyme tablets to help digest food and dietetic information
http://www.cftrust.org.uk/aboutcf/livingwithcf/aspectsofcf/ [U Other aspects of CF such as transplants, CF related diabetes, and fertility.





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dinosteveus Avatar
9y, 10m agoPosted 9 years, 10 months ago
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#1
Any chance you could change/add a pole answer?

As i've heard of CF but don't know anyone thats got it.

So basically need a "I don't know anyone with CF"
#2
Iom-RF
Any chance you could change/add a pole answer?

As i've heard of CF but don't know anyone thats got it.

So basically need a "I don't know anyone with CF"

Good point. :thumbsup:
I cannot change the poll in any way, so I've asked a Mod to add it.:thumbsup:
#3
Same here heard of it but don't know anyone that suffers from it.
#4
same here. I'll vote if you can add it.
#5
ditto
#6
I have a neice aged 18 and a nephew aged 1 with CF.

Thank you very much Dino for all your information and advice :)
#7
Me too, heard of it but don't know anyone that suffers from it.
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#8
its been added now so you can all vote:-D
#9
One of the little girls in my sons class has CF (9 year old) and so has her younger sister
1 Like #10
Thanks to everybody that has participated in the poll so far. :-D :-D

moschino, you're welcome, if I can be of further help let me know. :thumbsup: :thumbsup:
#11
Bump.
#12
Have Voted :)
#13
Just voted, I seem to one of many who have heard of it, but don't actually know anyone who suffers from it.
#14
I don't know anyone who has it either :thumbsup:
#15
My son's uncle (on his mum's side) died from it aged 16. He had it bad and my son knows he had it bad. My son's cousin has it even worse and he is only 12. It's heart breaking for children to know such things go on as they don't fully understand it. I'm glad this thread is here as maybe it will provide a bit of understanding to the people who know very little about it.
#16
Tru Faith, why did you remove your post? That was a very interesting 'video' on YouTube:-
http://www.youtube.com/watch?v=LxAiwoHwVbA
Thanks for posting it.
#17
dinosteveus
Tru Faith, why did you remove your post? That was a very interesting 'video' on YouTube:-
http://www.youtube.com/watch?v=LxAiwoHwVbA
Thanks for posting it.

That was very moving! :)
#18
dinosteveus
Tru Faith, why did you remove your post? That was a very interesting 'video' on YouTube:-
http://www.youtube.com/watch?v=LxAiwoHwVbA
Thanks for posting it.

Tbh, I just changed my mind, dont know why though as I personally found it very informative & touching :oops:
#19
birdyboyuk
That was very moving! :)

Yes it was :)
#20
Tru Faith
Tbh, I just changed my mind, dont know why though as I personally found it very informative & touching :oops:

No probs :thumbsup:
#21
Sorry for the bump. The poll finshes in three days, then I'll leave it to vanish.
If anybody has any question, please just ask.
#22
voted :)
#23
loupomm
voted :)

Thank you :-D
banned#24
Gosh it must be one hell of a decision to go ahead and try for a baby with odds that high, i never realised the odds where 1 in 4 :oops:
#25
sassie
Gosh it [COLOR=blue]must be one hell of a decision to go ahead and try for a baby with odds that high,[/COLOR] i never realised the odds where 1 in 4 :oops:

Not if you don't know you both have the 'faulty' gene. :-(
banned#26
dinosteveus
Not if you don't know you both have the 'faulty' gene. :-(

sorry and i hope you dont mind me asking do you become a carrier only of the gene if born to only one parent with the faulty gene? If that makes sense
1 Like #27
sassie
sorry and i hope you dont mind me asking do you become a carrier only of the gene if born to only one parent with the faulty gene? If that makes sense


I don't mind you or anybody asking questions. :thumbsup:
The way we understand it is, if one Parent has the CF Gene and the other one does not the Child will not have CF, but there is a 50/50 chance of them being a carrier of the faulty gene but you have no symptoms of the faulty gene.
banned 1 Like #28
yes i thought that was the case, thank you for the information :thumbsup:
#29
sassie
yes i thought that was the case, thank you for the information :thumbsup:

No probs and thanks for asking.:-D
banned#30
I must admit that although I have heard of CF i know nobody who has it. My mother suffers from multiple sclerosis, Although different, also comes with alot of problems.
#31
Prissymiss
I must admit that although I have heard of CF i know nobody who has it. My mother suffers from multiple sclerosis, Although different, also comes with alot of problems.

Ooooo, I'm sorry to hear that. :-( :-( :-(
banned#32
dinosteveus
Ooooo, I'm sorry to hear that. :-( :-( :-(



Dont be, she has also recently had breast cancer and a masectomy.

If she has nothing wrong it would give her nothing to talk about up the bingo.:-D

She's one of lifes survivors.

I am a true believer in mind over matter and she seems to justify this:)

She was diagnosed with MS over 20 years ago. I was 15 and cried alot thinking how she would be gone soon.

Now, I truely believe she will out-live us all.
#33
Prissymiss
Dont be, she has also recently had breast cancer and a masectomy.

If she has nothing wrong it would give her nothing to talk about up the bingo.:-D

She's one of lifes survivors.

I am a true believer in mind over matter and she seems to justify this:)

She was diagnosed with MS over 20 years ago. I was 15 and cried alot thinking how she would be gone soon.

[COLOR=blue]Now, I truely believe she will out-live us all[/COLOR].

Nice attitude and way of thinking. :thumbsup: :-D :-D
#34
Prissymiss


Now, I truely believe she will out-live us all.

You know I think that about my mum
Lupis,,,lung cancer.....strokes
and she's still here!
Don't know how she does it
#35
I've heard of it sure but wouldn't know the signs of the illness.
#36
ade2j
I've heard of it sure but wouldn't know the signs of the illness.

Sorry for the C&P, but it gives more in depth detail then I could give.



How is Cystic Fibrosis diagnosed?

Cystic Fibrosis is increasingly being diagnosed through screening, but some babies and older children (and even adults) are diagnosed following unexplained illness.
There are three types of screening for Cystic Fibrosis: newborn screening, carrier testing and antenatal testing.



Newborn Testing
Following a campaign by the Cystic Fibrosis Trust, the National Screening Committee recommended that all babies should be screened for Cystic Fibrosis. It is planned that this screening programme will be in place across the whole of the UK by April 2007.
The test is a heel-p-r-i-c-k to sample blood as part of the normal Guthrie test carried out on all children. The sooner CF is diagnosed, the sooner appropriate treatment can begin.
At present, newborn screening is part of NHS care in Scotland, Ireland, Wales and parts of England. For more information please see the [COLOR=#0000ff]UK Newborn Screening Programme Centre[/COLOR].
Carrier Testing
A simple mouthwash test can be taken to tell if you are a carrier. This is important if a relative has CF or is a known carrier. It is very important to have the test if your partner is a known carrier.
Antenatal Testing
This test is used early in pregnancy to tell whether a baby has Cystic Fibrosis. It is usually offered to mothers who are recognised as being at a high risk of having a child with Cystic Fibrosis.
Other tests
Other tests for Cystic Fibrosis are the sweat test (people with CF have more salt in their sweat, which can be detected) or a genetic test, which is a swab taken by gently rubbing the inside of the cheek to check for the faulty CF gene.
banned#37
My father who hates hospitals and was in for a triple heart bypass while I couldn't visit as was in for early cervical cancer at the same time. He said to let him go, now over 15 years later he is still here. Although unfortunatley his friend who went through the same op at the same time as him died a few years ago. I went on to have two children with no help after being told it would be very difficult. All my Grandparents have died of cancer.

As I said before, I think a positive attitude and the love of a good family brings its own fortunes.

Dont believe all you are told.

Live life to the full.

Make the most of the time you are here however long it may me.:)
#38
Prissymiss
As I said before, I think a positive attitude and the love of a good family brings its own fortunes.

Dont believe all you are told.

Live life to the full.

Make the most of the time you are here however long it may me.:)


That is a really nice attitude on life! :thumbsup:

To think all of lifes moaners never seem to enjoy anything, But as you say, Life is for living and live it to the full :) .
#39
My friend has a son with cf.
Also my baby has just been diagnosed as a carrier of the cf gene, which means that my wife or i must be a carrier too.
#40
bluntslide
My friend has a son with cf.
Also my baby has just been diagnosed as a carrier of the cf gene, which means that my wife or i must be a carrier too.

I'm very sorry to hear that. :-(





Thanks to all everybody that voted and commented. The poll results are very interesting, only 4 members had not heard of CF out of 63 that voted, I think that's pretty good.
14 voters know someone with CF, now that is very shocking.:-(

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