Saturday 23 June 2018

'It's a miracle' - Irish Cystic Fibrosis sufferer (14) on how new drug has changed his life

Benat Potokci
Benat Potokci

Benat Broderick

14-year-old Benat Broderick, who lives with cystic fibrosis, writes about how the drug Orkambi has changed his life. Every weekday he rises at 6.30am to start his medical routine. Every evening, he starts it all over again at 8.30pm before he can go to sleep. Benat, who loves computers and playing tennis, dreams that doctors will find a cure for Cystic Fibrosis. But Orkambi has made a big difference to his life:

There is currently no cure for cystic fibrosis. The life expectancy is 38. Thankfully people are living beyond this age.

In April 2017, a new drug called Orkambi was approved here in Ireland. Orkambi is a drug that helps to prevent CF getting worse.

I have been taking Orkambi for the past year and it has made a huge difference to my condition.

Before I started taking Orkambi I always felt tired, I had less energy, I was getting admitted into hospital for coughing up blood, having repeated chest infections. Overall, I wasn’t in the best of health.

Since starting Orkambi it has made a huge difference to my health. It has improved my weight. Since taking Orkambi I have gained approximately 10 kg,

I have grown a lot taller too over the past year, it has made a difference to my lung function.

My lung function has gone up by a good five per cent.

That may not see that much to someone but when you have cystic fibrosis and your lung function goes up, it’s a miracle!

Because we are always fighting infections it can be hard at times to get the lung function up, but since taking Orkambi my lung function has stayed stable.

I have not been admitted for IV antibiotics other than the routinely scheduled one, every four months.

I used to go in every three months for IV antibiotics, but since Orkambi this has been upped to four months.

Orkambi has really improved my quality of life and since being on it, I am living a better quality life.

I’m now able to go for longer walks without getting out of breath. I’m able to eat more. I’m able to play longer in sports, I’m able to now keep up with my friends. I'm now able to do basic everyday things more easily.

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