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Thursday, April 24, 2008

Cystic Fibrosis FAQ

Most of you know about Coughing the Distance the upcoming documentary, but what do you know about Cystic Fibrosis (CF)? I have CF and I rode from Paris to Istanbul for CF Research and Awareness. So what exactly is Cystic Fibrosis? Read on!

Q: What is Cystic Fibrosis?
A: Cystic Fibrosis (CF) is the most common life threatening, recessive genetic condition affecting Australian children.

Q: How does it affect people?
A: CF affects primarily the lungs and digestive system, however with improved medication and treatment life expectancy has been extended considerably.

Q: Who gets CF?
A: CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have to have CF themselves.

Q: How common is CF?
A: Approximately one in every 2500 babies will be born with CF. One born every four days.

Q: How many young people have CF?
A: Approximately 3000 and there are 1 million carriers in Australia.

Q: How is CF diagnosed?
A: In Australia, all babies are screened at birth for CF. A blood spot test is applied and if this test proves to be positive a sweat test will be done to measure the amount of salt in the sweat and it is with this test that a final diagnosis is made.

Q: What is their life expectancy?
A: The average age expectancy is around the mid 30s, but not so long ago that was teenage years or younger. The great improvement has been brought about by research.

Q: What are the symptoms of CF?
A: People with CF may have the following symptoms:

• Persistent cough, particularly with physical effort.
• Some difficulty in
breathing or wheezing with effort.
• Tiredness, lethargy or an impaired
exercise ability.
• Frequent visits to the toilet.
• Salt loss in hot
weather which may produce weakness.
• Poor appetite.
Q: Is there a cure for CF?
A: Cystic Fibrosis is not curable at this time. However, with today’s improved treatment most people with Cystic Fibrosis are able to lead reasonably normal and productive lives. A great amount of time, energy and money is being directed towards finding new and improved ways of treating CF and finally finding a cure.

Q: Is CF contagious?
A: CF is not contagious. Coughing is a frequent symptom of CF. Some people are afraid they may catch it, but CF is an inherited condition which is present at birth. You cannot “catch” CF and you cannot give it to anyone else.

Q: How is it treated?
A: Intense daily chest physiotherapy to move mucus in the lungs. 40 enzyme replacement tablets each day to aid digestion.

Q: Why have things improved?
A: Mainly due to research and better knowledge and management of the condition.

Q: Does the CF National Organisation receive Government funding?
A: No – The States receive funding to support the CF Community but no money for research.

Q: Is there a cure?
A: No – but it can be found.

Q: Why “65 Roses” Day?
A: “65 Roses” is a small child’s effort to pronounce his sister’s condition. As he couldn’t pronounce Cystic Fibrosis, he called the condition “65 Roses”.
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Sunday, April 20, 2008

Thursday, April 17, 2008

The inside story

Was very special to be inside the studio at WIN TV and seeing Susie life! One of the highlights was tasting the **braised** Moroccan mini roast that Victoria Hansen prepared in the studio!

Ross Symonds my favourite newsreader from my past was there as well. Of course I did not recognise him :( My memory is like a seive!

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Wake Up My Little Susie

Yes, it will happen tomorrow! Tune in between 10am and 11am for Susie!
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Wednesday, April 16, 2008

Canberra trip

Lucas is filming me here. I am talking to the wooden cat! We have hours and hours of narrating and interviewing to do. We interviewed David one day, I met one of our sponsors today, we visited the hospital for a full lung function test - took hours and hours! I visited government departments to get tax concessions for our funding - to no avail. Life in the fast lane! Not getting around to my friends :( or families. Work to be done!

I should be on TV on WIN next Friday between 10am and 11am! I will try and tape it somehow and put it on the blog!

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Thursday, April 03, 2008


WIN TV, will speak to me next week! I will see Susie at the Wollongogn studio next wednesday when they record for the week ahead. Yeah, watch out Susie, here I come. Keep an eye on this website for more info in the next week:

All the other TV shows that we have approached have not responded. Sunrise is coming to Hobart in the very near future, but despite the dozens of approaches we made we have not heard from them. Their loss!

Thank you CF Tasmania!

CF Tasmania has just advised me that a $3000 grant has been approved and a cheque was mailed to me promptly! This is great news as I am incurring lots of costs lately. I am due to appear on WIN TV which requires travel at my own cost to Wollongong, I need to go to Canberra to film and discuss the documentary with Lucas. We have thousands of dollars to pay for professional services incurred with our project...

We hope to soon find an Australian TV network for the documentary and with a bit of luck obtain a pre-sale fee. It will get us out of deep water!

Thank you CF Tasmania! It could not have come at a better time!