Taking on the Great Scottish Run for Cystic Fibrosis Trust

How we met

I met Bob while I was at university, that was 21 years ago and we’ve now been married for 16 years. I was training to become a student nurse at the time and I had never heard of cystic fibrosis.

Bob told me all about the condition, and as our relationship got more serious and we started talking about marriage. I went online to research more about CF. I wanted to be there to support Bob if he ever needed it. However, Bob didn’t have any symptoms in the beginning and he was always fit and healthy.

Bob’s health challenges

In 2010 we had a beautiful baby girl, Katy. At that time Bob was going to regular check-ups but he was doing great and settling into fatherhood - we were a happy little family. It wasn’t until five years later that Bob started having health problems. I remember him getting a chest infection and having to take an IV drip at home, but unfortunately the infection just wouldn’t go away. Bob was admitted to hospital, and this led to two years of hospitals visits and when it was most severe, Bob had to stay in hospital for six months - it was a very difficult time for us.

We were so relieved when he was finally discharged from the hospital, but he needed support with his breathing, so he was put on oxygen and confined to just one room. It was Christmas, but Bob was very tired so he slept a lot, and to be honest it seemed as though his condition was getting worse.

Modulator trials

The following month, Bob was offered the chance to trial a new medication and he started taking Orkambi. It only took about six  weeks to see the improvement. He had a lot more energy and started helping with chores around the house, and before long he was taken off the oxygen. We were surprised by the dramatic results as he had been unwell for such a long time. The highlight of it all was booking a family holiday to Corfu that year and we had a brilliant time!

Bob’s health is so much better now - he’s taking Kaftrio and living a full and happy life. We are planning more family holidays and enjoying every moment.

Support from Cystic Fibrosis Trust

In the most challenging times, we received lots of advice and support from the online forums on Cystic Fibrosis Trust’s website, especially when we were having treatment to conceive our daughter and wanted someone to speak to about our concerns. It was great to have a support network, information and all of the resources we needed.

The Great Scottish Run

Bob is fit and healthy now, but I’ll always remember the support we received from Cystic Fibrosis Trust when we needed it most. That’s why I decided to take part in the Great Scottish run in October, to raise funds for the Trust and help people living with CF. I’ve ran marathons before but I haven’t run in over four years, so I’ve taken out my running shoes and I’m back to training again. I’m feeling motivated and looking forward to race day!

You can support Claire’s fundraising challenge here.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives – and we won’t stop until everyone can live without limits imposed by CF.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.