Jennifer, a dear friend of mine, an amazing mum, teacher and all round awesome human touched on the fact that the disease is a silent illness as Aveline appears healthy physically but on the inside she is very sick. So we need to be mindful of how this illness can be silent and not obvious to the eye. Jennifer has kindly answered some questions about what life looks caring for a child with CF. These are all the questions that popped into my mind and questions I know many of us wouldn't have the answers to and will help us all understand how this illness can really impact an individual.
How does CF affect day to day life?
The affect of Cystic Fibrosis varies amongst individuals. Our daughter Aveline is just one of 3,000 people in Australia living with this chronic illness. She requires, daily medications, vitamins, physiotherapy, added salt and a high fat diet to keep her healthy. Her Cystic Fibrosis medical team are extremely supportive and have talked us through treatment from when she was diagnosed at just 5 weeks of age. We feel grateful to have support on hand from doctors, nurses, physiotherapists and dieticians as needed.
With the lungs being one of the primary organs affected, it is important for people with CF to engage in regular physical exercise and maintain the highest possible lung function, so we do our best to keep Aveline active.
Even before Covid-19, our family was very conscious of colds and flus. Hand hygiene is of great importance as well as staying away from others when they are sick. A simple cold for a regular person may be a set back, but for a person with CF it can mean months of medical treatments and could even be life threatening.
In the past, people with CF would socialise, however over time, medical research revealed that people with CF should not be in contact with one another as they can transmit infections. Consequently, CF can be a very lonely disease. Technology and social media have allowed individuals to connect however this is not in person.
Maintaining physical health, can mentally impact the day to day life of people with CF and their families as they undergo hospital appointments and hospital stays and at times and have to miss out on regular activities that others many take for granted.
What are CF treatments like and how often do they need to be taken?
There are no days off from CF. Cystic Fibrosis causes Aveline to be pancreatic insufficient. This means, that her pancreas does not process the fats in foods as it should. Being pancreatic insufficient means that with every food that contains fat, Aveline must take pancreatic enzymes. Despite looking “healthy,” Aveline requires added fat to her diet to ensure she maintains her weight as it can be hard for some people with CF to put on weight.
Salt does not move through the body the way it normally should when you have CF, therefore Aveline has very salty skin. This results in her having added salt into her diet and as she grows bigger, she will be required to take salt tablets.
Specific vitamins A, D, E, and K are also supplemented into Aveline’s medical routine as people with CF struggle to maintain these vitamin levels.
Aveline has twice daily antibiotics and which has been the case since about 2 months of age. This will continue until she is about 5 with the aim to keep infections at bay. Physiotherapy takes place daily and twice daily when Aveline is unwell in the form of bouncing on a fit ball and chest percussion.
Lung infections are common amongst people with CF. A person with CF has regular throat swabs to check for infections. Until she is old enough to give sputum samples, Aveline must undergo an annual general anaesthetic procedure called a bronchoscopy in order to check the status of her lungs. This might sound like a lot of treatments. But for many children Aveline’s age this is not all. Some must endure daily nebulisers especially if they have infections, others require feeding tubes to put on weight, or port-a-cath for IV antibiotics.
The daily grind of medical routines is relentless and exhausting for both the individual with CF and their families. We never know what is around the corner for our daughter. Over time, as she grows, Aveline will be introduced to more medications. Her disease will progressively get worse.
How we can help?
We are desperate for a Cure for this life limiting disease. I will not just accept that my daughter has a life expectancy of about 38. I am passionate about raising awareness and funds for Cystic Fibrosis research for both Aveline and her fellow CF warriors. We can all be part of the cure by donating to Cure 4 Cystic Fibrosis Foundation. Cure4CF seeks to raise funds for the most promising medical research across the nation. You too can join our CF Army to fight the good fight with us and help pave a future free of this disease check out www.cure4cf.org
I am so inspired by Jennifer's story and I hope we can all help make a difference by raising awareness and donating to the charity to help find a cure for all the amazing CF warriors.
Donations can be made to www.cure4cf.org