Cystic Fibrosis Awareness Month

May is CF Awareness month

Cystic Fibrosis Awareness

What is Cystic Fibrosis?

Cystic Fibrosis (CF) is a genetically inherited condition that affects many organs within the body including the lungs, pancreas (Digestive system) and sweat glands.

Individuals with CF produce an abnormally excess amount of think and sticky mucus within the lungs, airways and digestive systems. The excessive production can adversely impact functions of the pancreas (involved in food digestion) and trap bacteria in the lungs causing recurrent infections and irreversible lung damage leading to lung failure.

Who gets Cystic Fibrosis

Cystic Fibrosis is a genetic disease where individuals inherit two copies of defective genes [CF Gene] from each parent. It is a must that both parents have at least one copy of the defective gene. Within Australia 1 in 2,500 babies are born with Cystic Fibrosis: 1 baby every four days. 1 in 25 people carry the CF gene, however, are typically unaware as they are unaffected and therefore asymptomatic.

Symptoms of Cystic Fibrosis

Frequent symptoms individuals with Cystic Fibrosis may experience:

Very Salty Tasting Skin
Persistent Coughing At Times
Frequent Lung Infections
Wheezing
Shortness Of Breath
Poor Growth And Weight Gain
Difficulty With Bowel Movements
Rectal Prolapse
Male Infertility

How is Cystic Fibrosis Diagnosed:

Diagnosing Cystic Fibrosis with a multi-step process including a standardised new-born screening test [Guthrie Test] performed on all new-born babies and a Sweat Test identifying the quantity of salt within the sweat. The Sweat Test is one of the most reliable tests utilised to diagnose Cystic Fibrosis. A child with Cystic Fibrosis will have higher levels of Chloride [component of salt] within their sweat.

How is Cystic Fibrosis Treated:

Cystic Fibrosis is a lifelong disease which requires ongoing treatment and management. Individuals with CF can undergo various forms of ongoing treatment such as the follow [Cystic Fibrosis Australia, 2020]:
– Intensive daily physiotherapy for lungs
– Enzyme replacement capsules for digestion of food
– Anti-biotic therapy for lung infections
– Aerosol mist inhalations via a nebuliser to help open the airways
– Salt and vitamin supplements
– A nutritious diet that’s also high calorie, high salt and high fat
– Exercise – important to help clear the airways and build core strength.

Every May, the Cystic Fibrosis community unites for the Cystic Fibrosis Awareness Month. The purpose the awareness month is for the community to gather to learn more about the disease and share personal experiences. 5 ways to get involved:

65 Roses.

1. Visit the 65 Roses Virtual Rose Garden where you can plant a rose, gift a rose or create your own garden at 65 Roses Virtual Rose Garden
2. Take on the 65 Roses Challenge. Can be anything from running 65km, swimming 65 laps or cycling 65 minutes a day.
3. Host a fundraiser for Cystic Fibrosis in the month of May. Wear the colour red, donate proceedings to the Cystic Fibrosis Foundation or organise a morning tea to aid with raising funds.
4. Make a once-off or recurring donation that will aid with the wellbeing and quality of life of people affected by CF.
5. Use your own voice to raise awareness. Share your story on social media and tag @Cysticfibrosis and use the #CFAwarenessMonth.

Maddison Law – Exercise Physiologist