'Cystic Fibrosis… moving stats' blog discussion

This is the discussion to link on the back of Martin's blog. Please read the blog first, as this discussion follows it.
Read Martin's 'Cystic Fibrosis… moving stats' Blog.

Click reply to discuss below.
«13

Replies

  • SuzySFSuzySF Forumite
    118 Posts
    re the Blog - I've read it - but i had no need to - i'm a CF - transplanted adult (Heart & Lungs 1991 aged 31 - now 47 !!)

    yes its hard work, just doing physio to keep breathing !! but something that realllllyy reallllly bugs me is this ...the average survival age is now 31, due to massive progress made with antibiotic treatments and preventative medicine. What has'nt kept apace with this is the Governments acknolwedgement of this fact - we live longer. In the 1997 Labour manifesto that got them into government (Tony Blair) promised he would add Cf to the list of illness exempt from prescription charges (diabeties etc are on there). To date it is still not exempt..and Blair has retired with broken promises. We live in hope (as we do daily - it seems to come along with the defective gene that causes CF !!) that Gordon Brown will now honour that promise (after all he has a Cf child). I attend the Cf unit at Heartlands Hosp but live in Wales, I now luckily dont have to pay (free since April 2007) - previous to that I had a prepaymet certificate for a year....English Cf's over 16/18 (if in full time education) have to pay still. These drugs keep us alive and well..and beleive it or not even a transplant is exempt in England..even tho you would die without the anti-rejection drugs....

    it's not like we dont have enough on our plates already !! it's adding insult to injury really. Of course the problem was - we didnt live past 16 so it didnt matter that Cf wasnt on the exempt list. IF we didnt do our antibiotics i.v's or inhaled, our pancreatic ensymes etc we'd be very ill...if a diabetic didt take their insulin - they would be very ill or die..whats the difference ???

    On May 9th i organised a coffee morning for Cf it was Cf Week - we raised £200 in 2 hours....it not much but add lots of littles together and u make a big !

    personally - i'm very well - had a bad winter with 2 hospitalisations for ii.v. antibiotics for chest infections, lost a lot of weight (goes with the illness ) now eating for britain and so far put on 4 lbs.....10 to go ... i am the envy of work colleagues all dieting for summer exposure - and i taunt them with cream cakes, chips, pies, chocolates and crisps... :) its got to have a up side hasnt it !!! rofl

    to that end - Aldi and Lidl are fave food shops along with Tesco (points) - we dont have any here where i live so go on a big expedition monthly - got a big chest frezzer - freeze cheese, butter, cooked ham, big lasagnes etc.
    they freeze really well :)

    BIG THANK YOU MARTIN FOR MENTIONING CF - its whats known as an Orphan Charity..small. We dont get much recognition and they dont have money to splash on multimillion pound advertising like Oxfam, RSPCA, NSPCC etc. but are just as much in need of funding.
    What goes around - comes around
    give lots and you will always recieve lots
  • DrunkstarDrunkstar Forumite
    889 Posts
    My wife hs CF and so its, obviously, an important part of our lives. We have ran shows for the CF trust many times, making around £200 a go (not great, but evry little bit helps).

    Im glad you know about this Martin, and I hope that it will help raise awareness... and lots of donations to the trust. ;)
    The "Bloodlust" Clique - Morally equal to all. Member 2
  • I just want to thank you Martin for raising the awareness of this condition. I will admit that until two weeks ago I was completely ignorant of what CF entailed, that is until my new five week old grandaughter was diagnosed with it.
    The facts that you have supplied are completely in line with what the hospital has told us, we are very lucky that we live in Belfast, Northern Ireland as there is a centre of excellence for CF at the Royal Victoria Hospital and the staff there have been superb.
    We can only pray that the more CF is highlighted the more funds for further research and management are raised.
  • Thanks Martin for your blog pointing out the CF disease, it's frequency and ramifications. I'm now 52 and a day does not go by when I don't think about my sister and brother who died from CF. My brother was the last - coughing himself to death 16 years ago when he was 28 while waiting for a heart & lung transplant in the Brompton Hospital.
    They were both unfortunate with their timings of birth in that they were born just as medical advances started and they followed just behind the wave of new techniques and drugs all the way along, unfortunately, always being slightly too poorly to make the most of them as the physical damage had already been done.
    My mother has spent most of her adult life (at least since she had the children) raising funds for the CF Trust, so your blog was a welcome reminder that money is always needed for the research and anything that increases awareness is good. My early life was a continuous rota of coffee mornings, jumble sales and home visits - getting dragged everywhere. I had the misfortune to (nearly) make new friends all the time - only to be told that "such and such has died so you won't see him/her any more..." I must have seen a dozen children go in our small corner of Northumberland so I'm very well aware of the seriousness of this horrible illness. I'm grateful for witnessing many scenes of fortitude and inner strength that most people don't see very often.
    One fact that really irked my brother and sister, and that your poster SuzySF points out, is that they had to pay all their lives for their drugs - until the very end when the Vancomycin and Heroin were free.... This is especially ironic to me now, as I have been diagnosed with an under-active thyroid gland - which means I get free prescriptions for life! I'll probably live to at least 70, cycling every day etc etc. My brother and sister had a job to walk to the chemists to pay!

    It's a funny old world.
  • Cheap_DateCheap_Date Forumite
    217 Posts
    Part of the Furniture Combo Breaker
    ✭✭
    Thanks Martin for trying to raise awareness of CF. My 8 year old son has CF, spends a huge amount of time taking meds, doing physio, nebulisers, etc. He has a 14 day course of IV antibiotics every 3 months and doesn't moan (too much!!)

    Just like to echo Suzy's sentiments about Labour's promise to add Cf to the list of illness exempt from prescription charges. To date it is still not exempt. It makes me furious. I wonder if Gordon will do anything?!

    Thanks again Martin!
    Jan 2015 Grocery Challenge £185.10/£500
  • jennybridgerjennybridger Forumite
    113 Posts
    if only you and MSE were around 30 - 50 years ago - my grandparents would have been very grateful i'm sure! sadly my twin aunt and uncle (who i never met) didn't have the benefits of modern drugs and science. and it is something i know i am very aware of my genes and my future regarding possible children of my own.

    there's a blog i read from a mother of 2 with CF in east anglia (norfolk i think) where i often read of her struggles with money - i pointed her in this direction and i hope she has found MSE and found some useful info.

    i'm shocked the it's not on the exempt list :mad:. diabetes needs daily meds and monitor equipment and thats exempt (step dad is) - so why is CF any different??!!
    Reduce, Reuse, Recycle!
    Rejuvenate, Reinvent.......
  • PamanhamPamanham Forumite
    3 Posts
    It's great that awareness is being raised and a HUGE thankyou to Martin. I really wish that CF was up there with Cancer research. I ran for 'Race For Life' and wished that I could do something similar for CF. My parents are constantly raising money as my brother has CF. He will be 33 next month. He copes fantastically well considering what he has to go through and never complains. He's only had one major stay in hospital and every few months when he gets really poorly he has IV's to fight the infection. He's a real inspiration to me and I hope Gordon Brown who is my MP and Prime Minister, seriously looks into all the issues mentioned above.
  • poppiedoppoppiedop Forumite
    1 Post
    Part of the Furniture Combo Breaker
    MoneySaving Newbie
    Hi, I've never posted before (too shy!) but reading about the CF on here has just made me register.
    My partner of 4 years has CF. He is 34 and we plan to marry at the end of next year. :D

    Money is tight and we live in fear of him catching a bug. We own our house but he can't get any Life cover we could afford. When we go away travel ins costs a small fortune and obviously the prescription charges mount up too! We were hoping too that the charges would be dropped but also we understand CF isn't recognised for things like disablity claims if he's off work? He doesn't get sick pay.Thankfully the most time he's had off sick has been a couple of weeks. We consider ourselves really lucky as he's quite well most of the time. But it is a worry at the back of your mind. Anyway i do't want to sound like doom and gloom as he's a really positive person and plans to do a skyjump for CF soon! It's nice to read other people are in the same boat as you x
  • poppiedop wrote: »
    Hi, I've never posted before (too shy!) but reading about the CF on here has just made me register.
    My partner of 4 years has CF. He is 34 and we plan to marry at the end of next year. :D

    Money is tight and we live in fear of him catching a bug. We own our house but he can't get any Life cover we could afford. When we go away travel ins costs a small fortune and obviously the prescription charges mount up too! We were hoping too that the charges would be dropped but also we understand CF isn't recognised for things like disablity claims if he's off work? He doesn't get sick pay.Thankfully the most time he's had off sick has been a couple of weeks. We consider ourselves really lucky as he's quite well most of the time. But it is a worry at the back of your mind. Anyway i do't want to sound like doom and gloom as he's a really positive person and plans to do a skyjump for CF soon! It's nice to read other people are in the same boat as you x

    My partner has CF and she has CF related diabetes and gets free prescriptions, if he has CFD then he should be exempt from prescription charges. It's disgraceful that CF suffers have to pay for prescriptions considering the amount of medication that is required. OH has DNase which are £20 per vial :eek: not to mention the mounds of other stuff she needs to take.

    me and OH were on local telly a month back and a little bit is about CF but the rest is about my arduous claim for carers allowance.

    http://news.bbc.co.uk/1/hi/england/7390612.stm
  • phebe3phebe3 Forumite
    246 Posts
    Part of the Furniture 100 Posts Combo Breaker
    ✭✭
    I agree with all the posts up here...it is an orphan charity...not as big as cancer etc. Two friends I was in a class at school with, both of them q close friends, have gone on to have children with CF so I do know about it. I't's hard work and having to fork out for stuff adds insult to injury i think. My daughter has asthma and is running perilously near to the time she will have to pay for medication too...without it she could die so it's not like medication is a luxury. How can pple have breast reduction, help in getting off smoking etc totally funded by NHS and yet pple who NEED drugs to stop them DYING have to pay. In addtion these pple are not nessesarlu high earners because of their condition. Something is wrong in this country prioriy wise it seems at times.......
This discussion has been closed.
Latest News and Guides