What’s on your mind?

I’m feeling very isolated and anxious since my son was diagnosed with CF a few months ago. He’s 5 months old and doing well but I think I need some support. Can you help?

 

Matthew’s answer: 

Thank you for your question.

It’s very normal to feel a little isolated as a new parent or carer with a child who has cystic fibrosis (CF). CF can be very complicated to explain to the people in our lives, and it can be hard to help them understand the challenges of having a child with CF. Sometimes it can feel easier to just get on with it or struggle alone.

Practically, it can also be very difficult to reach other parents or carers who have a child with CF. The risk of cross-infection means parents of children with CF cannot meet up as easily as they might like and often miss out on the chance to talk to someone who knows how they feel.

At the Trust, we have a peer support service called CF Connect, where you can speak to a trained volunteer who also has a child with cystic fibrosis. Whether your child has recently been diagnosed or you’ve got worries or questions further down the line, CF Connect can put you in touch with someone who understands.

Our CF Connect volunteers are all parents of children with CF, so as well as offering a listening ear, advice and support, and the chance to share experiences, they also understand the challenges you may be facing. We have volunteers across the country with children of different ages who are there to help.

(This feature first appeared in the August 2023 issue of CF Life magazine) 

If you’d like to find out more, or chat to one of our CF Connect volunteers, just contact our Helpline on 0300 373 1000, email [email protected] , or WhatsApp us at 07361 582053

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects around 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.