“We need to keep fundraising so that everyone can live a life unlimited”: CF News guest editor, Shannon’s CF Week story
Hello, my name is Shannon, and I am so excited to have guest edited the special CF Week edition of CF News, the free monthly newsletter from the Trust. This month, we are announcing our new photo challenge, introducing our upcoming Live events and sharing how you can get involved with CF Week and Wear Yellow Day!
But first, let me properly introduce myself
I am 27 years old, have CF and currently work in my first ever full-time job at a supermarket clothing department. I have an older sister and younger brother, neither have CF. I competed in Irish dancing as a child, but now photography is my main passion.
I was diagnosed with CF at 18 months old after a period of ill health. For a long time, no one could work out what was happening. One day, my mum took me to the hospital and refused to leave until someone figured out what was ‘wrong’ with me.
After having a sweat test, I finally got my diagnosis.
My experience with Kaftrio
The first time I heard the word Kaftrio was during a routine clinic appointment, where my doctor told my mum and me about a new wonder drug that was in the works.
Fast forward a few years and five months into shielding, and we got the news that Kaftrio had been approved in the UK. And I was eligible. Once I held the box in my hands, I felt so excited and hopeful. It felt like I had been waiting for this day my whole life and couldn’t wait to see my lung function improve immediately.
Unfortunately, it didn’t go as planned. My team had told me to expect what was called ‘the purge’ and that I should notice a difference in my body very quickly. However, a week on Kaftrio and I felt no different.
Then things took a turn. A few months later, I started to notice some changes. Sadly, not positive ones. I have never had confidence regarding my body image, and taking Kaftrio certainly didn’t help this. I began to gain a lot of weight, and my body shape completely changed.
I have always struggled with my mental health. But I could tell that Kaftrio was making things harder for me. I am usually very calm, but suddenly I became angry and agitated. The littlest thing would annoy me. I knew I was being unreasonable, but I couldn’t stop the anger I constantly felt. Insomnia was also a considerable side effect I was facing.
Physically and mentally, I didn’t recognise the person I was becoming, and I knew everyone around me could see it too. With no improved health, lung function, quality of life or mental health, the decision was made for me to stop taking Kaftrio. I was so disappointed, but after a few months off Kaftrio, I felt more like myself again.
While we must recognise and celebrate the fantastic success of Kaftrio and the incredible progress in CF research, it’s also important to remember that the fight has not yet been won. And that is why we need to keep fundraising so that everyone can live a life unlimited!
The CF Photo Challenge
I set up the #CFPHOTOCHALLENGE during the first lockdown in 2020. I was bored of being at home, and I was missing my photography, so I decided that I wanted to do something to bring people together.
That’s when I came up with the challenge. I asked people to photograph a list of things at home while also raising awareness for CF, and I was blown away by the positive response it got. So many people got involved, and I’m so proud that I did something meaningful during that tough time.
This year for CF Week 2023, we are bringing the photo challenge back, and we want you to get involved! All you have to do is work your way down the list (that will be posted on the Trust’s Instagram) and take a photo for each letter.
It's entirely up to you how you want to interpret and photograph each letter; you can be as simple or creative as you want. Keep an eye on Cystic Fibrosis Trust’s Instagram for more information soon!
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 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.
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.
Wear Yellow Day 2023
Wear Yellow Day will be returning Friday 16 June 2023. Register your interest today!