Cystic fibrosis is an isolating condition.
For 10-year-old Amarli Allan of Prospect, CF has affected nearly every aspect of her life since the day she was born.
From the food she eats to the children she can play with at school, her mother Tameka said her condition comes with a “specific set of conditions” aimed to help keep her healthy.
“If someone has a minor cold and those germs are passed onto Amarli, she can end up in hospital,” she said.
“It is something we have had to learn how to live with, but it can be very frustrating when people don’t recognise how serious it is.”
On Sunday, the annual 65 Roses Ladies High Tea will take place at Entally Lodge with the aim of raising awareness for the genetic condition.
Organised by Cystic Fibrosis Tasmania, vice president Judi McGee said CF was still very misunderstood by people in the community.
“One of the biggest problems with CF is that people don’t look sick, despite the seriousness of the condition,” she said.
“For CF patients their symptoms are masked so there is often a big misconception about how sick someone actually is.”
Ms McGee said Tasmania currently has the highest number of people living with CF in the world, outside of Ireland.
The condition affects every organ in the body apart from the brain, but is best known for its impact on the lungs.
There is currently no cure and the life expectancy is about 37 years.
Donations to Cystic Fibrosis Tasmania can be made here.