Cystic Fibrosis

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Who has heard of Cystic Fibrosis?

  • Yes I have heard of it

    Votes: 50 64.9%
  • No I have not heard of it

    Votes: 4 5.2%
  • Yes I have heard of it, & I support it

    Votes: 24 31.2%
  • No I have not heard of it, but I will start supporting it

    Votes: 2 2.6%

  • Total voters
    77
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No problems Cass. I was a bit worried that what I wrote could possibly taken the wrong way but it is a tough thing to have to face with someone. Yes, it is just an issue you have to deal with but it also shows the depth of your love and commitment to Andy and I think that is a beautiful thing and it makes the time you spend together something to treasure even more. To many of us take things for granted at the best of times and you're in a position where you know you need to cherish every moment, if you know what I mean. :D
 
A friend of ours daughter, Emmah Money, has CF and was voted 2005 Girlfriend Of The Year. She is truly inspirational and has gone through some pretty tough times. She has appeared on Australian Story on the ABC, you may have seen it.
 
Thank you Tempest.... What I should've said was I see Andy for the person he is not the disease. Some people have a hard time seeing past a sick persons disease.

No Fester I hadn't seen it.... do you have any links to any of her story?
 
I have CF to. Was surprised when I saw the pole on a herp site lol

Facts are actually

1 in 2500 are born with it.

1 in 25 people are carriers (they don't show any effects of CF at all)

If both parents are carriers there is a 1 in 4 chance the child will have CF.

2 in 4 chance they will be carriers

1 in 4 chance they will not be a carrier or have CF.

Occurs equally in both males and females.

Hope you are keeping well and out of "Trouble".
 
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I am 33.

Was fine until I was about 17, always played lots of sport.

It's been a battle and a lot of work to maintain my health since then. I am fortunate enough to be able to hire a personal trainer. And try to exercise every day. But for most of the past 8 years my treatment time per day has been around 4-5 hours a day. 5 Nebulizers,2 physio sessions, 3 x IV antibiotics infusions, 25 pills, exercise, supplements all to be done each and every day.

It is an illness where it isn't obvious to the eye (unlike things such as cancer or if you are in a wheel chair etc) maybe thats why it sometimes goes unnoticed with fundraising. But its an illness which you are delt with at birth, and from day 1 the treatment regime starts. There is no cure and you work just to keep yourself as well as the previous year.

I had all the tests for a double lung transplant in Feb this year. However I have managed to get my health back on track and hope to put it off for as long as safely possible. Currently I am as well as I have been since 1999, so lucky I didnt get the transplant just yet.

This also impacts greatly on everyday life such as maintaining a job, getting through uni, relationships, travelling etc. So the disease doesnt really finish with just feeling unwell, it impacts on other areas of your life too.

But I treat it as an inconvinence. I dont live my life around CF, I just fit it into my life. I know in order to stay well and enjoy all the other great things life has to offer, I have to maintain my health as best I can.

Treatment in Melbourne is world class. We have one of the top CF physios in the world and a CF team that really works well. Doctor, dietician, physio, psychologist, OT, social worker, nurses, scientists. So I can't complain about the level of treatment.
 
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Well said Miffy..

Andy has just started on the Nebulized drugs for a couple of hours a day. Hes got a couple of antibiotics which are affecting how much time he can spend out of the sun, physio has started, he actually likes his vitamin supplements cos they taste like smarties apparently :lol:..... now started on a high fat intake diet and has had to up his intake of the salt pills....

I totally agree that its not really a visiable disease so people don't tend to take much notice of it.

Its really nice to hear that you have survived to the age you are and that you are going strong. Sometimes you just need to hear other peoples stories to gain a bit of hope and to know what you are going to be in for....
 
Thanks for coming out Miffy, well said as well.
I started nebulised antibiotics when I was 5, IT SUCKS.
25 tablets is alot, I dont really want to get upto that many.
Thanks again every1
 
I'm bumping this up. I think it is something everyone needs to know about.

We travel through our lives, not really noticing the troubles and pains that others go through. There are so many "ribbon" days now, that people are starting to get to the point where they want to know. There are so many diseases that people are unaware of, that take just as many lives as Cancer or other highly known diseases. It shouldn't really matter whether it's 1 in 4 or 1 in 4000 children that are born with it, in my opinion. Awareness is so important

Well done Trouble for bringing this to the attentions of those that didn't know about it. I hope you are well and having a 'good' day.

Cass, you know how strongly I feel about you and Andy. You're a great young couple, and I love the way you and he push through the barriers that are put up in front of you. Keep it up sweetheart!!!!! You know our hearts and our thoughts are with you both.

I didn't know that we had a day for CF.. I will never forget it though.. it's my daughter's birthday.
 
Thats exactly right Grumpy...

Thank you sooo much for yours and Jas's support. I remember ages ago on one of my threads somebody had a bit of a bif as to why I would put our private life and struggles out on a public forum. This is a part of the reason. You can never get enough support whether it be from your closest family or the seemingly complete stranger.

You can also never get enough awareness. I think if CF had as much publicity as Breast Cancer or other Cancers etc there would be alot more both government and private funding for research and treatment/enrichment programs for sufferers and thier families.
 
I would support it if I could but as our finances are very limited at the moment I cant. But i do support the Cancer foundation monthiy
 
I would support it if I could but as our finances are very limited at the moment I cant. But i do support the Cancer foundation monthiy

How about supporting the cancer foundation;) and the C.F foundation as well.?
You could cut the donation of the cancer money in half & donate the other half to C.F.?;)

Thanks for everyones support, Grumpythesnake I am doing well at the time being, I ahve heaps of support from my friends at school, but it is hard when I go into hospital every 6 weeks for 2 weeks minimum:cry:
 
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