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Life-limiting illness

What do you know about cystic fibrosis?

10 replies

Catworrier · 20/01/2020 23:22

The loveliest girl I know has cystic fibrosis. Has always been a trooper with it but recently it has gotten really bad.

Her mum has kept me informed all the way of what is going on. She has now mentioned the pseudomonas infection she has is mucoid and very serious.

I've tried to google more about this. The risks and the facts that deep down I'd rather ignore. I want to be able to be there for my friend and daughter, google search brings up so much medical documentation I cannot understand it, and I don't want to ask her. I need her to focus on her own strength and her daughter.

So can anyone help me understand what is going on? What the risks are?

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pallisers · 20/01/2020 23:27

there is a new medication recently approved in the US which is a bit of a gamechanger - not for all CF sufferers but for a lot of them. I don't know if the NHS has approved it though.

www.statnews.com/2019/10/21/new-vertex-cystic-fibrosis-drug-approved-extending-treatments-to-90-of-patients/

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nocoolnamesleft · 20/01/2020 23:30

The CF trust has quite a lot of info:
//www.cysticfibrosis.org.uk/what-is-cystic-fibrosis

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Catworrier · 20/01/2020 23:32

Thanks @pallisers
I'll take a read in the morning. She's been trying out a newer form on nebs recently.
But it's the infection on top of the CF that's causing the damage.

Apparently the mucoid version of it has a high mortality rate. 😔

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Catworrier · 20/01/2020 23:33

Thanks @nocoolnamesleft
I've got loads of info on the basic CF side. It's more the infection on top of the CF I need to learn about...
...if only I went to medical school.....

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pallisers · 20/01/2020 23:40

the new drug developed by Vertex in the US is a literal life-saver for many - I heard someone say it is "don't bother planning for college" to "better start that pension". But it is terribly expensive and I don't know if it is available in the UK yet. I imagine any of the CF organisations in the UK are all over it though.

www.npr.org/2019/11/01/775509387/new-hope-for-patients-living-with-cystic-fibrosis-after-scientists-unveil-therap

I'd recommend listening to this rather than reading it. The interviewee has devoted much of his life to finding a treatment for CF

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Superlooper · 20/01/2020 23:44

It's awful. I'm in Ireland - highest CF rate in the world. A 21 year old neighbour died a year after getting a double lung transplant. While average life expectancy has risen, it's like from under 10 years in the past to over 30 years now. So still terrible. Relations have 3 children, 2 with CF. Heartbeaking, the children are really sporty but getting really limited in what they can do. But still making the most of everyday. As we all should.

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LoveAfternoonTea · 20/01/2020 23:47

Ask her. As someone with a child with a life limiting illness, I can tell you that it is good to feel that someone is prepared to talk about the hard stuff with you. Put it on the table, and see if she wants to take the offer.

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pallisers · 21/01/2020 02:47

Superlooper, there is a medicine available that could help your relatives children. It is super-expensive but it exists (just in past year). I'm sure the CF society in Ireland is well aware of this but it is literally a life-changing drug.

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hazandduck · 21/01/2020 03:03

My best friend’s baby is 9 months and was diagnosed at her 5 day check. They have just been told she can be given the new life changing drug referenced above when she turns 2, it ‘stops the clock’ effectively, they originally said she could have it from age 6, but now the NHS have said it will be available sooner. The main priority is keeping her as healthy as possible til then because with CF the damage done to their lungs is irreparable. I am no expert just going by what she tells me. It’s very hard, every sniffle, you have to stay away, be vigilant, to stop the growth of bacteria.

The infection you refer to I am not sure about and I am so sorry your friend is suffering.

It is an awful disease that I knew so little about before my goddaughter’s diagnosis but the campaigners are doing an amazing job , including my friend, at raising awareness which I’m sure is why these newer drugs are becoming available, because doctors saying your child having a life expectancy of 30 is no longer seen as acceptable when more research and treatment could be available!

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Smiling2019 · 24/05/2020 09:26

About 25 years ago, I lost a friend to CF but I am amazed at how much medicine has progressed since then. I have another friend who has CF and she’s just turned 35 and given birth to her first baby. She’s had numerous serious infections over the years and knows she will need a transplant at some point. With C19 being a big issue at the moment, the whole family is shielding but my friend is very positive about life and her future.

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