Cystic Fibrosis Day – Friday 22nd June 2018

The week of the 18th June to the 24th June 2018 is Cystic Fibrosis awareness week. Across the UK people will be participating in fundraising events and raising awareness Cystic Fibrosis. On the Friday the 22nd June 2018, The Gatwick School will be supporting a Cystic Fibrosis fundraising ‘Mufti Wear Yellow Day’. On Thursday, Year 9 student Ethan Nott will lead a Secondary Phase Assembly discussing Cystic Fibrosis which will lead onto our Mufti day on Friday.

On the 15th May 2017, Ethan Nott was diagnosed with Cystic Fibrosis at the age of 12-years old.

Ethan’s story: -

Hello, my name is Ethan and I have Cystic Fibrosis (CF). May last year I was diagnosed with CF and it has turned my world upside down. Before my diagnosis I was able to do what every other 12 year was able to do, but then soon realised that would all have to change and it has. There are many restrictions when you have CF due the risk of infections. 

In the beginning I took to it quite well, then I realised that it was for the rest of my life...however long that would be. I was told the life expectancy of someone with CF is 40 years old, which at the time seemed quite old. Then I realised that my Dad was 47 and my Mum was 45...which doesn't seem so old now. 

I have many ups and downs and the introduction to the new routines have been difficult. I have to do breathing exercises twice a day, using and instrument called an Aerobika, I do this once before school which means getting up very early and then again after school. I now use a Nebuliser which is once a day and then I take supplements and antihistamines, When I have an infection I have to take a variety of antibiotics up to three times a day, sometimes an hour before food, which means my mum has to wake me at 5.30 in the morning to allow the medication to work. Whilst all of this is my normal day, I still have to fit in all the hospital visits and check-ups (30 in the last year) and a full day at school. Having CF is exhausting...I have always been a very fit person but due to other medical complications, and I'm sure most of you have seen me on crutches, it has been very difficult to keep up, but I have managed to get back into swimming two to three times a week and cycle as much as possible to keep my lung function healthy which is so important when you have CF. I do get very tired but I will do whatever I can to be as fit as possible. This is still very new to me and my family and I am fully aware as time passes my treatments, exercises and hospital visits will increase … I do not want CF to control me or my life.

Thank you for supporting CF day at The Gatwick School. If possible please share my story and if you can please donate, it really does make a difference. 

Ethan Nott Year 9.

Raising awareness about Cystic Fibrosis

Cystic Fibrosis is an inherited condition caused by a faulty gene. You can’t catch cystic fibrosis or develop it later in life. For someone to have CF, they must inherit two copies of the faulty gene – one from each of their parents.

The faulty gene is carried by 1 in 25 people. A carrier does not have cystic fibrosis, they just carry one copy of the faulty gene that causes it. If two people who carry a copy of the gene (carriers) have a baby, there is:-

  • A 25% chance the baby will have Cystic Fibrosis.
  • A 50% chance the baby will be a carrier of the faulty cystic fibrosis gene.
  • A 25% chance the baby will neither be a carrier nor have cystic fibrosis.

In the UK there are more than 10,400 people living with Cystic Fibrosis and each week five babies are born with the condition.

There is currently no cure for Cystic Fibrosis, and each week in the UK two people die of the condition. However, understanding and treatment of Cystic Fibrosis are improving all the time.

The Gatwick School would like to support both the research into treatment for Cystic Fibrosis and the Cystic Fibrosis Trust who help people diagnosed with Cystic Fibrosis to live a full and productive life. Please support Cystic Fibrosis Day by wearing yellow and donating £1.00 on entry to school. Cystic Fibrosis wrists bans can also be purchased.

Kind regards

Mark Roessler (Head of School), Ethan Nott (Year 9 Student)