Karen (30) who is from Enniskillen was diagnosed with a rare genetic condition called pulmonary surfactant metabolism dysfunction type two (SMPD2) and has been on the transplant list since the start of September. 

The condition is so rare that Karen is thought to be the only person in Ireland or the UK to have this condition. 

Karen explains that she discovered something was wrong when she went through a screening as part of applying for a visa to stay in Australia. An X ray of her chest showed a lot of scarring in her lungs, and she had been suffering from breathlessness. The then 25 year old packed her bags and came home to Enniskillen, and found herself deteriorating. She now requires oxygen throughout the day and has only 20% lung function which makes breathing difficult. 

Karen is documenting her story on Facebook as she aims to turn her story into a positive one and raise awareness of organ donation. 

“Since I have started my blog, ‘My Lung Story’ people have been messaging me privately and the support has been unbelievable. People have said that they did not want to be an organ donator, but since reading my story they have signed up. My focus now is to turn this into something positive and to get more people signing up to become donors,” said Karen.

Karen’s sister Christine was born in 1981 but was very sick and had lung problems resulting in her spending the first 18 months of her life in hospital. She gradually became stronger but her condition was never diagnosed. At the age of 17, she suffered a collapsed lung, and became ill and Christine continued to deteriorate and passed away when she was 27. 

Karen now faces a wait for a suitable donor, and can be called at any time. She will have to travel to Newcastle in England for a minimum of six weeks where she will have her operation. 

Jessica Cullen, a friend of Karen’s, has set up a go fund me page as Karen embarks on a trying journey. The money raised will go towards supporting her when she travels to England for her lung transplant. 

To donate, visit https://www.justgiving.com/crowdfunding/justbreathe and to follow Karen’s journey visit ‘My Lung Story’ on Facebook.