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Life Changing Modulators- Mel’s Story

We share some stories from WA members on the life-changing effects of the new modulator treatments.

This drug is incredible. Having a degenerative lung disease is hard to live with.

You slowly stop living, except I’m stubborn and kept working and studying.  It’s like you’re slowly dying.

I started with low 20s lung function in January 2020 – see my first picture.

Unable to breathe; always having a bad night sleep due to coughing fits; zero appetite; all food was tasteless and no matter what I ate I couldn’t gain weight. A skeleton at 35kg.

I was on the lung transplant list and so depressed and anxious. I remember when I started seeing the results of this drug. I slept through the night without a coughing fit!

I woke up and could breathe with ease. No restriction. Just easy. I was so appreciative and literally just enjoyed breathing. I can’t explain how incredible it was.

I ate. And ate. My weight went to 45kg within weeks.

I could do my exercise training with exercise and could push harder. Within six weeks my lung function reached 46%! I am now 56%. I then was too well to tick the box, so I was removed (a first for WA) from the lung transplant list.

Within a few months I fell pregnant. I haven’t had a chest infection for twelve months. I’m fitter than I have been in years.

This drug has allowed me to continue to gain weight and carry a healthy baby with no complications. We fought hard for Trikafta®, so myself and others could get compassionate access. And now we’ll fight hard to get Trikafta® approved so that the 90% of CFers eligible in Australia can be afforded the access they deserve.

Head to the link below and sign the submission to be part of our fight!

Have Your Say on Trikafta®

Community submissions are open for the March PBAC agenda. For more information and to make a submission visit www1.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form

 

Interview from RED Magazine, Edition 1, 2021.


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