Navigating CF as a teenager: Tess's story

Growing up with CF

I was born in India, before moving to England for a short time, and then I moved to Norway permanently when I was 8 because of my health. Prior to this move, I had been between Norway and England, and it was in Norway I was diagnosed with CF at 18 months old. Growing up, I didn’t initially notice anything different about having CF, but when I started secondary school I became much more aware of it.

Starting Kaftrio

I started taking Kaftrio in March 2022, which was slightly delayed due to Norway not prescribing the medication initially. Although my lung function has improved on this medication, it has not had the same profound impact that you hear it having on some people. It has unfortunately negatively impacted my mental health, through increasing my anxiety, and worsening my body dysmorphia.

Juggling school alongside CF treatments

When COVID hit I was at the start of secondary school, and therefore all lessons automatically happened online. However, as COVID eased off, and more and more people started going back to school, my health took a turn. Since then, I have been forced to do all my schoolwork from home, which luckily my school have been very understanding about. It’s usually in the autumn and winter period that something pops up and I must be hospitalised. It usually has something to do with Pseudomonas aeruginosa, bronchoscopies, polyps, or yellow Streptococcus, and I have also had problems with digestion.

Support from others with CF

I have talked to a few other CF patients over the years, and there was one particular call I had recently with a lovely woman a few years older than me. She had experienced similar difficulties with decreasing energy levels, so it was great to talk to someone who understand what I was going through straight away. However, I haven’t had a lot of contact with others with CF, mainly because there are so few of us in Norway with cystic fibrosis!

Career ambitions

I´ve always been interested in helping other people, so I would love the idea of being a counsellor, supporting people both with CF and without. I´ve also always loved to dance, so it’s definitely an ambition of mine to be able to teach and choreograph. My current low energy levels make this a tricky option, but it’s a hope and dream I have for the future.

Raising awareness

It feels a bit like no one talks about having cystic fibrosis in your teenage years, a time of immense change already, and I have really struggled navigating this part of my life. Therefore, I’m keen to raise awareness about the realities of this, as it’s what I wish I had had when growing up.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.

For many of those who have been taking Kaftrio, the effect on their physical, social and emotional wellbeing has been wholly positive. For others, taking Kaftrio has been more mixed, and they are surprised to experience neutral or negative thoughts, feelings and changes as well as positive ones.

Read our factsheet on different experiences of Kaftrio

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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