Comment: You know the medical definition... but how many of you actually KNOW what CF is?
Most of you know the medical definition; a progressive multi-organ illness which affects mainly the lungs. In Ireland average life expectancy is around 28 but many have lost their lives in their teens or early 20s.
But how many of you actually really KNOW what CF is?
CF is constant hospital visits or stays. CF is a needle stuck in your chest for weeks on end to deliver IV antibiotics to make your lungs temporarily better. CF means taking three different types of anti-sickness meds, but these don't always work so you're still so violently ill that you can't eat or drink for days. This then means you are hooked up to IV fluids through the needle in your chest 24-hours a day, which then causes fluid retention.
Can you imagine what it's like to gain 10kg in fluid in 24 to 48 hours? The pain is horrendous, a huge swollen tummy that could be mistaken for a baby. You develop a 'tummy' on your back with the amount of fluid your body can't rid of, huge swollen legs, hands, face, your joints and bones in agony.
CF is knowing that you are living with a ticking time bomb that can go off at any time. CF is haemoptysis: coughing up blood from your lungs like water coming out of a tap, the fear, the panic that if it doesn't stop you are going to die, you are going to bleed to death. CF is being isolated from others with the same illness.
We know exactly what we go through yet we can't even be in the same room as each other. CF is having to watch your CF friends having the life drained out of them, having to watch most of them slowly die, because they picked up a bug or flu that was to end their short lives.
CF is constant stares from strangers when you have a coughing fit, constant looks of terror in case I may be spreading the bubonic plague. CF is always being on edge, constantly listening for a sniffle, sneeze or cough from anyone near you, because that can land you in hospital for weeks.
CF is loneliness. Knowing you could spend your life alone because you get rejected from possible life partners because they cannot deal with the endless hospital visits, endless tears when you can't even speak because you're so breathless, the constant fear 'am I next?'. CF is finding out who your real friends are, who cares enough to visit, send a card, a text to see how you're doing. CF is rejection from "friends" because you can't keep up with normal healthy lifestyles.
CF is fighting every day to be here, to defeat the monster that lives inside you. CF is showing your brave face to the world when you are lying in your hospital bed fearing for your life because it hurts to breathe, to move, to shower, the excruciating pain of gasping for breath when you try to walk a few steps. CF is sometimes being in hospital and not knowing whether you will walk out through the front doors or leave in a coffin through the morgue.
CF is a lonely, traumatising, unforgiving, frightening illness yet there's one thing that has made a difference to my life... Orkambi.
All of this was my reality for approximately eight months of the year. Before Orkambi, CF controlled practically every aspect of my life. CF took away my brother and some of my closest friends. Before Orkambi I was approximately eight months of the year in hospital, in the last three years I've spent just 12 weeks in hospital. Incredible.
While Orkambi isn't a cure, it has stopped progression completely, it has increased my lung function capacity by 10pc and I have boundless energy. I no longer live my life from a hospital bed. Orkambi has given the CF community hope and sometimes hope is all we have.
Jillian has organised a protest with other people with Cystic Fibrosis outside Dáil Éireann today from 1.30pm to 2.30pm.