Cystic Fibrosis Day: Newport Civic Centre clock tower lit up

Cystic Fibrosis day is also known as Wear Yellow Day and is designed to raise awareness that the condition can have on people and their families, as well as to raise funds for the Cystic Fibrosis Trust.

A spokesman for the council said: “The lighting is to help raise awareness of the condition, and show support to residents with Cystic Fibrosis and their families.

“A request to light up the tower was made, and we were happy to show our support.”

Cystic Fibrosis (CF) is a genetic condition that affect the lungs and digestive system, though there can be other complications such as diabetes and liver issues.

People with CF produce more mucus because of a gene being affected that controls the movement of salt and water in and out of cells.

This mucus then builds up in the lungs, digestive system and other organs.

The condition can be so severe that later in life some people with CF need to have lung transplants.

There is no cure for the condition, but there are treatments available to help manage the condition and the various symptoms.

Natasha Woodruff is one of the people behind the request to the council.

Her 11 year old daughter Cara was born with CF and this has galvanised Ms Woodruff to raise awareness of the condition.

“In my opinion and experience Cystic Fibrosis is not well known - before I had my daughter I never knew what Cystic Fibrosis was,” Ms Woodruff said.

“This was not through ignorance, I had just never heard of the lifelong genetic condition before.

“Since having my daughter I have met many people in Newport who have Cystic Fibrosis.

“More awareness is definitely needed, more than 10,600 people in the UK alone are affected by Cystic Fibrosis and it is an invisible illness.

“People with CF have to take so much medication, complete different treatments including nebulisers and physiotherapy every single day, all of this is on top of their normal daily life which can be very time consuming."

Ms Woodruff heard that a mother of a child with CF had requested that the council light up the clock tower and took it upon herself to aid the cause.

Natasha Woodruff's daughter Cara Kent, 11

She emailed the council with the same request and appealed to others on Facebook to do the same.

On Monday, June 14, Ms Woodruff received confirmation from the council that the clock tower would be lit up this Friday.

“Feedback from the community, particularly online, has been amazing,” said Ms Woodruff.

“Some who don't even know who I am are willing to show their support and learn more about CF.

“I know that myself and the people who I have met that either have CF or have a relative with CF are extremely overwhelmed with the support that has been shown”.

Recently, there have been petitions to make new drugs that treat CF available through the NHS.

The drugs, such as Orkambi, Kaftrio, and Symkevi, are now accessible to patients depending on age and genetic mutation.

Newport resident Serin Watkins, 10, is the only person under 12 doing a drug trial for Kaftrio.

Ms Woodruff said: “Since knowing about Cystic Fibrosis and watching my daughter Cara and best friend Lucy go through struggles in life due to this condition, I have learnt that they are so brave and strong and they will deal with anything that comes to them in their lives.

“They are so resilient and I completely admire them.

“They have taught me that no matter how bad your own situation may be or feel, you need to always look on the brighter side and enjoy life.

“Enjoy every second that you have”.

To donate to the Cystic Fibrosis Trust, visit www.cysticfibrosis.org.uk/donate or text YELLOW5 to 70500 to give £5.