This article is more than 3 years old
A life unlimited means freedom without the struggle to breathe
I was diagnosed with CF at six months. It took a bit longer than usual due to my mum’s rare genetic mutation, which took six different hospitals to confirm. Signs I had CF were there but confirming it took a lot of work and put my mum and dad through a lot of emotional stress; essentially it was six months going through the unknown.
Living with CF is like a full time job
I’m not going to sugar coat cystic fibrosis because in today’s world where everything is changing, developing and moving so fast it can make it very hard for those with disabilities to keep up.
Over the last six months CF has affected me greatly. As of last August, I had to quit my job because it became a life and death situation and I had to make the decision to put me first. My health and my CF have essentially become my full time job. My routine consists of a cocktail of medications, up to 10 nebulisers a day, an hour of chest clearance, CF diabetes tracking, and keeping a high calorie, high fat diet.
The biggest challenge with CF is not being seen for who you really are, what you can really do, and what you’re really capable of as a person. People just see the disability and think your fragile, weak and unable. All of us with a disability are so much more than that. We are strong, we have been through so much and have probably experienced more in our lives than an average healthy person has experienced in their whole lifetime. Our disabilities are our superpower!
In the toughest of times, my family and friends are a valuable and constant support to me. I truly wouldn’t be where I am today without them. Self love does not come very easy living with CF and mentally I have had many struggles. It’s been the incredible people (special mention to my amazing mum and dad) in my support system that have quite literally brought me back to life and reminded me that life can be so beautiful and worth living.
The biggest challenge with CF is not being seen for who you really are, what you can really do, and what you’re really capable of as a person. People just see the disability and think your fragile, weak and unable. All of us with a disability are so much more than that.
Siobhan
We’d not be where we are today without the advancements the Trust have worked tirelessly to achieve
My inspiration to host a FeBrewary event was the concept of bringing people together for such an important cause, reminding people who may have known about CF already, and educating those who were unaware. I was honestly blown away with the amount of people who came along and the amount of funds we managed to raise given that my initial target was only set at £100! It was a wonderful event and a huge success, we raised over £500! Hosting the event reminded me how much I am loved and the lengths that people will go to, to support you!
I wanted to hold an event because the Trust have been a huge support and have allowed me to be involved in some amazing opportunities. Cystic Fibrosis Trust are also a huge support when it comes to raising awareness and making medical and treatment miracles happen. Without the Trust, the CF community would not have seen the incredible, life-changing advancements in medicine, education and care that have been made possible over the last 20 years. Those living with CF, and being born with CF today, would not be where we are without these advancements that the Trust have worked tirelessly to achieve.
The breaths we take are so precious and are very often taken for granted
To me, a life unlimited means freedom without the struggle to breathe. The breaths we take are so precious and are very often taken for granted because it is something so simple and a natural function of the body that we expect to just keep working, but when you can’t breathe everything is a struggle and a fight. It’s a struggle that no one will ever understand unless they are going through it like we do with CF everyday. That breath you just took, it is so precious!
We all know that a cuppa and catch up isn't just for FeBrewary, so if you'd like to hold another fundraiser later in the year, then please do get in touch and we'll send you fundraising materials to support your event. Every penny you raise can help us support even more people like Siobhan to live a life unlimited.
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.
Fundraising carried out by our community helps us fund vital research and support those living with CF. Help fund cutting edge research into new therapies and treatments by taking part in an event.
