What’s in a name?
Trikafta (elexacaftor/tezacaftor/ivacaftor and ivacaftor), often referred to as ETI within the medical industry. Also known as “the miracle drug” for Cystic Fibrosis.
This one little word, with many aliases, is packed with so much meaning and a mix of emotions. For some, it promises a healthy life, a symbol of hope. For others, it is an example of how profit trumps lives in the pharmaceutical industry. There is also the other side of the coin, where a person with a shortened life expectancy, suddenly has the potential of many more years ahead. Then there is the knowledge that while one can benefit – others still have to wait. And yet more stories, where the impact of Trikafta is not as expected. Here are the stories of brave CF warriors, and their unexpected moments on their Trikafta journeys.
The Unseen Burden of Healing: Navigating Life with Trikafta – Carmen Möller
When I began Trikafta on December 1st, 2021, it was my miracle drug. For the first time in my life, I started to feel a level of wellness and capability that was previously unimaginable. Physically, I began to experience changes, but these changes were only the beginning of a much deeper internal transformation.
As my health improved, so did the expectations around me. Suddenly, I was no longer just the person with Cystic Fibrosis who needed constant care and attention; I was someone who could work, contribute, and live a ‘normal’ life. This shift was exhilarating but also profoundly unsettling.
With wellness came a heavy burden. I felt a pressure to make up for lost time, to seize every opportunity, and to prove that this miracle was “worth it”.
Despite the gratitude I felt, I often found myself feeling numb. The joy and relief of improved health were overshadowed by an overwhelming sense of responsibility. I was expected to transition seamlessly into this new version of myself. I struggled to reconcile my past identity with my present reality.
The weight gain was visible at first, but the internal weight was invisible and far more challenging to carry. I grappled with the constant need to justify my existence, to show that I was more than my illness, and to find my place in a world that suddenly expected so much more from me.
Trikafta gave me the gift of health, but it also thrust upon me a complex emotional journey. I am thankful for this miracle, but I am also navigating uncharted territory, trying to balance feelings of guilt and gratitude. This is the unseen burden of healing, one that many with CF might understand—a journey that requires not just physical strength, but immense emotional resilience.
Reflecting on John 9:1-3, I am reminded that my condition has a purpose far beyond what is immediately visible. I believe my journey with CF is meant to showcase the miracles He has performed in my life. Through it all, my faith in Jesus remains my guiding light, reminding me that my life has a divine purpose and that I am never alone.
Photos and story courtesy of @_carmenmoller on Instagram. – share with permission
My child is the lucky one – a mother’s story
The hope that came with modulator drugs, could not have come at a better time. As a parent, your whole world crumbles when you are confronted with the diagnosis of an illness that changes everything. In one moment, the future looks different. All your worst fears come true – your child may not have everything in life you had hoped for. A future filled with hospital stays, IV lines, needles, poking and prodding is all you can see. Finally, the monster in the night has a name, and it is not pretty.
And then there is light. A box filled with blue and pinky-orange tablets that represent a future and life as close to normal as possible. But this box is elusive. The closest thing to a cure, the thing that can change your child’s life, is not within reach. It is outpriced beyond your earthly possessions. What do you do as a parent? You make plans, you raise funds and you find ways and means. And then comes the news that you can rest easier and your child can breathe easier. Yes, Trikafta now arrives in the post box. But at what cost?
As a parent, you are grateful that your child has the chance of an almost normal life. But then the guilt sinks in. So many parents still have to fight, while your child is the lucky one. One in a handful of children and other patients who have access to Trikafta. The sense of “survivor’s guilt” is overwhelming! And then there are the fears of “what if” today we have access – but tomorrow we don’t. What if we can no longer afford the extremely high medical aid contribution that allows for access? What if it stops working, or my child does not respond well? What if…
The journey has by no means been easy, but even more so it has not ended. Yes, my child is one of the lucky few and the knowledge of this fact by far outweighs the fears. As a fellow CF parent, I am committed to using the extra hours I’ve gained in worrying less about my child – to help fight for others so that they too can sleep better.
Trikafta Journey: My first lung function since starting Trikafta
This lung function took place two weeks before being one month on Trikafta. I had a lung function done as I woke up one morning not being able to breathe. While many of Trikafta celebrate the improvement in lung function, I had to grieve the fact that my lung function didn’t improve and dropped with 17% due to severe bronchospasm. I will go into more detail soon when I give my one month Trikafta update but for now this is what I am comfortably sharing while we are trying to figure out why I am having this reaction.
Story and photo shared from @dharmabredell on Instagram with permission.
A journey on the path of the unknown
The journey with Trikafta is different for each and every individual living with Cystic Fibrosis. And while we celebrate the wins together, let’s continue to fight the battles as a community. Let’s acknowledge the changes that come with access to Trikafta, the emotions of disappointment for those who continue to wait and the fears of the unknown of what the future holds. Let us walk this journey down the path of the unknown, together. And let us leave no one behind.
Please share your stories with us. We love to hear from you. Get in touch via info@sacfa.org.za