A YOUNG woman from Caernarfon is behind a successful social media campaign for a drug to treat cystic fibrosis to be made widely available on the NHS.

Danielle Blore’s Facebook post highlighting the effects of the “invisible illness” and the effectiveness of the expensive Orkambi drug in treating the condition, has been shared over 5,000 times.

As a result of the post, published on January 14, a follow-on online petition has been created and has already racked up over 100,000 signatures, meaning the subject will be debated in Parliament.

“This drug would be able to help around 3,000 sufferers in the UK,” said Danielle.

“It’s been proven to slow the decline in lung function of someone with cystic fibrosis by around 42 per cent.

“This means that I would have less hospital stays, less risk of getting sick and an overall better quality of life. It isn’t a cure but it is the next best thing.”

Cystic fibrosis is caused by a defective gene and mainly affects the lungs and pancreas and can cause serious lung infections.

Orkambi is currently licensed for use in the UK. However, it is not provided by the NHS except in rare cases, as it is not deemed to be “cost effective” by the National Institute for Health and Care Excellence (NICE).

“The reaction to my post has really surprised me,” said the 24-year-old.

“I never expected it to get so much attention and I’m so grateful that there are people out there who want to make a difference for people living with cystic fibrosis.

“Because it’s an invisible illness, people see me and don’t think there’s anything wrong with me.

“I have to take around 25 to 30 tablets a day. I cough a lot throughout the day too and bring up a lot of mucous. I also have to be careful not to catch any colds or viruses from other people otherwise I get very sick.”

Around two years ago, Danielle was admitted to the critical care unit at Liverpool Heart and Chest Hospital after suffering multiple organ failure. Blood transfusions eventually saved her life.

Danielle says that she is determined to live her life to the fullest and is “overwhelmed” by the support received since posting her views on Facebook.

Actor Tom Hardy, star of TV series' such as Taboo and Peaky Blinders, has shared the follow-on petition.

“It is a terrible disease and we shouldn’t have a price put on our lives," said Danielle.

"It fills me with optimism to think that I may have made a long-standing impact with my post.”

Carole Longson, director of the NICE Centre for Health Technology Evaluation, said:

“We know how important a new treatment option would be for people living with cystic fibrosis, but for the benefits it offers, the cost of Orkambi is too high. We can only recommend treatments when we are certain they are both clinically effective and represent good value for money.”