Inspiring fighter’s journey: Lung capacity below 40%

IMAGINE being aged in your 20s and after countless trips to hospital, the four walls that line each room and ward, feel like a second home.

Rhianna Johnson was diagnosed with cystic fibrosis, at birth.

IMAGINE being aged in your 20s and after countless trips to hospital, the four walls that line each room and ward, feel like a second home.

This is reality for 26-year-old Rhianna Johnson, who was diagnosed with cystic fibrosis at birth.

“I’ve been going to hospital since I was about nine, but my health improved a lot when we moved to Bargara, because the salt air was really good for me,” Ms Johnson said.

“Then when I turned 17, I got swine flu and my health slowly started to decline from there.”

Rhianna Johnson, 4, getting Physio treatment from her Dad, Greg Johnson.

Cystic fibrosis is a lung disease that effects the endocrine, digestive and reproductive systems, that overtime results in a build-up of mucus and lung infections.

“When I was born, life expectancy for people diagnosed was only their teens,” Ms Johnson said.

“Obviously you can’t reverse the damage caused to babies born around my time, you can only slow further progression of the disease down, but for people born now, life expectancy has increased to their 40s.”

Rhianna Johnson, 9, with her Oma, Trudi Van Elteren and her mum, Marietta McLellan.

The brave 26-year-old said her body is so depleted that she is physically unable to socialise with friends and can only manage 15 hours of work each week.

Last August, Ms Johnson was placed on a list to receive a double lung transplant, as her lung capacity had dropped below 40%.

“They recently took me off the list because of a new game-changing drug called Trikafta, that stabilises me for a little longer,” she said.

“But there is no cure and eventually without the transplant and lung function, there is no quality of life … it’s that or death basically.”

Rhianna Johnson was diagnosed with cystic fibrosis, at birth.

Despite this heartbreaking realisation, Ms Johnson said she is eternally grateful for all the support she and her family have received from Cystic Fibrosis Queensland.

“They’ve been helping my family out since I was born and the funds go to all kinds of things like grocery vouchers during hospital stays and accommodation for families,” Ms Johnson said.

Rhianna Johnson, after a recent trip to hospital.

Cystic Fibrosis Queensland will celebrate its diamond jubilee this year and to ensure the organisation can continue its vital work, Ms Johnson is selling merchandise at her workplace, Ultratune on Johanna Boulevard.

Roses will also be available to purchase from Ultratune on Friday, May 22, for $5 each.

To donate to the organisation directly, visit cysticfibrosis.org.au/qld/donate.

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