Behind The Spoonie Society

5 things you may not know about Cystic Fibrosis and Crazy Hair Day (With Jo Armstrong)

5 things you may not know about Cystic Fibrosis and Crazy Hair Day (With Jo Armstrong)

If you’ve seen the heartbreakingly beautiful YA tear-jerker, Five Feet Apart, you’ll know one or two things about Cystic Fibrosis.

But chances are, there is plenty you don’t know. For starters, CF is the most common inherited life-threatening conditions impacting Australian young people. Sadly, there is no cure for CF.

According to Jo Armstrong, CEO of Cystic Fibrosis Australia, a baby is born with CF every four days.

While CF impacts the entire body, including lungs, sinus and digestion, it is possible to lead a positive life. But the support of family and friends is crucial.

“Supporting a loved one with CF is very important, from being there to listen to them amid the highs and lows as well as providing physical support when it is needed too,” Ms Armstrong said.

“It is important too that people with CF remember there is hope.”

Ms Armstrong said supporting charities was a great way everyone can help those living with CF.

That’s where Crazy Hair Day comes in.

Organised by individual schools, it’s a day for kids to go a little bit crazy by styling or colouring their hair in a wild and wacky way. Why? To raise awareness about Cystic Fibrosis and raise money for the Cystic Fibrosis Federation. It’s easy to organise, simply head to Crazy Hair Day for Cystic Fibrosis to find out more.

In the mean time, here are five things you may not know about CF:

CF affects multiple organs

Although CF is thought of as a lung disease, it actually affects multiple organs, including the pancreas, liver, and intestines.

CF is caused by a faulty gene that affects the production of a protein called cystic fibrosis transmembrane conductance regulator (CFTR), which is responsible for maintaining the balance of salt and water in various organs.

CF impacts the respiratory system

Because CF primarily affects the respiratory system, thick and sticky mucus in the airways is produced, clogging the air passages and making breathing difficult. This then creates the perfect environment for bacterial infections. Recurrent infections can cause progressive lung damage over time.

CF causes digestive difficulties

CF blocks the pancreatic ducts, preventing digestive enzymes from reaching the intestines, which can lead to problems, such as difficulties in digesting and absorbing nutrients from food. This can then cause malnutrition and poor weight gain. Not to mention, the thickened mucus can block the bile ducts, potentially causing liver problems.

CF symptoms vary (so do their severity)

There’s nothing simple about CF. Symptoms can vary significantly, even among those with the same genetic mutation. Some people may experience mild symptoms, while others may face more severe complications and require extensive medical intervention.

Treatment is advancing (yay!)

It’s not all doom and gloom. Over the years, there has been some major progress in the treatment of CF. The introduction of specialised therapies, such as CFTR modulators, has drastically changed how CF is managed. These medications target specific mutations in the CFTR gen, leading to better lung function and overall health outcomes for many people with CF.

Leave a comment