WATERFORD woman Edel OConnor Bible has praised a new Cystic Fibrosis wonder drug that helped her get pregnant.
Ireland has the highest incidence of Cystic Fibrosis in the world approximately one in 19 Irish people are said to “carry” one copy of the altered gene that causes the condition. 
Edel and her husband Paul are now expecting a baby girl
Edel was on Kaftrio for five weeks when she discovered she was pregnant
For Edel, both her parents had the gene and it affected two of their five children.
She was just six weeks old after her dad spotted the signs. 
As the youngest and only girl, Edel had four older brothers, the youngest Seamus had passed away at 10 months old from the condition.
She said: My parents never knew they were carriers of CF, they had three sons before Seamus who were perfectly normal. The doctors told her not to have any more but a few years later they tried for me. 
So I was born and around six weeks old my dad kissed me on the head and he could taste salt. And that is a sign of cystic fibrosis, youre very salty. So if I went for a run, I would actually have little balls of salt on my face. So they got the sweat test done, and they confirmed it.
Edel said she was quite well throughout her younger years as she was strict with her medication. 
But when she was 16, she got a bug and that meant the introduction of nebulisers and masks into her routine.
She said: It just meant the health regime got bigger, to more than just tablets. But I kept going, stuck to my meds, and maintained my health and my lung function. 
Then about ten or eleven years ago when I was 23, things started to go downhill. Every eight to 12 weeks I was on IVs. I lost a lot of lung function. I used to be a beautician and had my own salon and I was doing a lot of spray tans.
I am convinced it damaged my lungs, I didnt feel it at the time but over a certain amount of time, I am sure it was making me ill. So I had to give it up.
Surgery proved to be helpful and new drugs , Kalydaco and Symkevi, gave her a new lease of life. 
But for the 34-year-old and her new husband, they had another battle.
They were struggling to get pregnant and began to feel it might not happen for them.
She continued: We had gone through fertility treatments and by 2020 we had gone through three IUIs. The next step was IVF but my husband sat me down and said he didnt know if we should do it.
“WIth the IUI, I had to inject myself in the stomach and every time it ended up with pain in my lungs, my chest was in bits, I could feel it affecting my CF but I did it anyway, and yet it never happened for us. 
We were supposed to do IVF in July but we said wed stop concentrating on it and see how we go.
She added: We were married in 2016 and I still achieved loads in my life, but then in November I was given an amazing drug for Cystic Fibrosis, Kaftrio. It only works for certain gene types and it worked for mine, thank God.
I was on it for five weeks and found I was pregnant.
And Edel said between not stressing about getting pregnant and the drug, it was a winning combination.
She said: I have no doubt about it, the drug helped. It helps the body to work as a healthy person. You are not fighting as hard.
“And then the stress from before, I had been so disheartened every month, so maybe the time to sit back and do nothing as I was cocooning helped. But I am 21 weeks and expecting a little girl.
She originally stopped taking Kaftrio after she got the good news, just to be sure. 
But she is now back on it, adding: I ended up back in hospital in March, I had a huge drop in my lung function and I need to stay strong for the baby.
There is no evidence of it causing any harm to the baby but at the start I wanted to err on the side of caution. But now the baby is five months and well growing so I have to take it and make myself strong.
Covid has been hard, I have been scared to go out, I havent been in a shop in a year, or anywhere really bar the hospital and walking in quiet areas.
“So I have gotten so far and done so well, Im safe and my baby is OK.
Some days it gets hard and we dont know when it is all going to stop, and I am terrified between the CF and being pregnant but I am grateful for the good things and I am excited to see what Kaftrio can do for me.
Today is the annual fundraiser for cystic fibrosis, but due to Covid, street fundraising is out of the question.
Instead, Cystic Fibrosis Ireland is calling for people to Strike a Pose with a Purple Rose, like presenter Bryan Dobson and model Rosanna Davison, and share the picture.
Paul and Edel on their big day in 2016 with their dogs and a flower girlCredit: MOZZ STUDIO www.mozzstudio.com
Rosanna Davison and Bryan Dobson took time to Strike a Pose with a Purple Rose for CF Ireland

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