WINTER IS A hard time for all those with low immunity.
For people like me with Cystic Fibrosis and the elderly trying to not catch something does prove a challenge.
Back in December, I was admitted to hospital for three weeks when I caught a viral infection. Doctors thought it might be the flu, which thankfully it wasn’t – that could be dangerous for a Cystic Fibrosis sufferer.
Because of the increased risk – in the winter time, I tend to hibernate a lot and when I do go out I cover up really well.
I still meet lots of people who don’t know what Cystic Fibrosis is and they don’t fully understand what the disease means even though Ireland has one of the highest rates of Cystic Fibrosis in the world.
Cystic Fibrosis (CF) is a genetically inherited disease that affects more than 1,300 people in Ireland. CF affects my breathing and can slow down the work of the pancreas meaning that sufferers need to take enzymes to help them digest their food. I also spend 40 minutes every day using a nebuliser to clear mucus from my lungs.
Currently, in Ireland, the life expectancy for people with CF is around 38 years old. But now thanks to advances in medicine, people are living beyond that too.
I was lucky enough to be offered a trial for a new drug Orkambi two years ago when I was 12 and it really transformed my life. The drug is now mainstream and this week it was announcedthat it would be extended for very young children aged 2 – 5 years.
Because it was a trial, though no one was certain how I would react to it. It was such an exciting time in my life, but scary too.
As you can imagine, starting a clinical trial takes a lot of courage especially for a 12-year-old but as soon as I started Orkambi I began to notice improvements.
Having CF means it can be difficult to absorb food and gain weight. One of the first things I noticed when I started the trial was that I began to gain weight. Soon I had put on over 10 kg which I was thrilled about!
A year after starting the drug there was a massive change in my energy levels too.
I love walking and playing tennis and it is important to do exercise when you have CF. I am now able to go for longer walks, stay playing tennis for longer and my breathing has got far better.
Having CF doesn’t really hold me back, it does slow me down a bit and I can’t always keep up with the others in PE but I always participate in the class.
Thankfully I didn’t have any side effects from Orkambi. Some people didn’t react well to it and got flu-like symptoms or it made it harder for them to breathe.
Recently a new cystic fibrosis drug was approved for use in Ireland called Symkevi this drug, again is not a cure but it is a step in the right direction. Symkevi has similar benefits to Orkambi but has fewer side effects for those people who couldn’t tolerate Orkambi.
The future looks quite positive in terms of Cystic Fibrosis research and future drugs, and a new drug Triple Combo is under trials right now. That is being heralded as the drug that will really transform Cystic Fibrosis sufferers lives.
I’m really positive about my future and plan to study journalism and broadcasting when I finish school.