Benat like most fourteen year old boys loves computers and tennis. Unlike most fourteen year old boys however, his daily routine involves medication, physiotherapy and blood sugar monitoring – because Benat has Cystic Fibrosis.
Ireland has the highest incidence of Cystic Fibrosis in the world and here Benat talks to me about the realities of living with this incurable disease.
What Cystic Fibrosis (CF) is …
CF is an inherited disease that primarily affects the lungs and digestive system, it causes mucus to build up in the lungs and you tend to get frequent chest infections over time. I got diagnosed with Cystic Fibrosis (CF) when I was 19 months, which is quite late because they now diagnosed CF at birth.
There is currently no cure for CF and the life expectancy for this awful disease is about 38. There are currently two drugs approved for Cystic Fibrosis here in Ireland to help prevent CF getting worse called ‘Kalydeco’ & ‘Orkambi’ these are not cures so they don’t stop all the symptoms of CF.
What the infamous Orkambi drug has meant for me…
Just over a year ago, here in ireland Orkambi was approved for patients aged twelve and up. Before its approval I was thankful enough to be on the Orkambi trial. That meant I got a head start on this amazing drug.
I started the Orkambi trial in January 2017 and I was expecting it to work straight away (which was not the case).
Orkambi for me took a good 6-7 months to notice changes such as my weight – my weight went up by approximately 16kg!
I grew a lot taller, I now have a lot more energy and better overall health.
My lung function has gone up also by a good 4-5% since taking Orkambi. I haven’t needed to go into hospital for anything other than my routine 4 monthly appointment. So I would say for me, Orkambi worked in a slow way but made me so much better
How Cystic Fibrosis impacts my life…
CF impacts my life in different ways, for example, every day I must take Nebulisers, Tablets (25), Inhalers, Airway Clearance, Exercise, Insulin, Manage my blood sugars.
Every day I have to be careful of who is well and who’s not. With CF, if I’m near someone who is sick I can very easily pick up whatever they have if it’s a cold or a bad cough. So I’m always wary of who’s well and who’s not.
The biggest misconception…
I would say one of the biggest misconceptions with CF is some people are afraid they’ll catch CF. It’s impossible to catch CF because its is a genetic disease that’s inherited from both parents.
One thing I wish people knew about CF is that we may look fine on the outside but you don’t know what’s actually happening inside.
How my friends react…
When I tell my friends I have CF, it’s quite funny because most of them have never heard of it and are always interested to know about it and there always very supportive.
Not letting it restrict my dreams..
My hope for the futures in to go into media particularly TV and Radio.
To learn more about Cystic Fibrosis visit Cystic Fibrosis Ireland here