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”.
