I live in Sydney and am a 30-something year old living with CF. I am married to a 40-something year old who is also living with CF. This makes us a little unusual! We put a lot of effort into looking after our health and with a little bit of luck thrown in, we both manage to stay reasonably well. We have two lovely Kelpie dogs who are the light of our lives and that we love.
I work full-time as a genetic counsellor. In my current role, I meet with pregnant women and their partners to discuss their ultrasound results and their options for further tests in pregnancy if they would like further information about the health of their baby. I enjoy my job but it can be stressful and emotional at times.
Janette answers a member question about finding reliable information about CF.
” I am 11 years old and want to find out more about my CF. I have googled CF on the internet but find it hard to understand what the information means and some of the information I have found has made me feel worried. How did you learn about your CF and what do you do if you don’t understand something or feel worried about what you learn?”
Janette: Most people with CF want to find out more about their condition and how it might affect them. I have looked for information about lots of different things about CF in the past. Googling is great as it will give you lots of information quickly but some of it will be hard to understand and some of it won’t be correct or up to date. It can be hard to know where to find helpful information. I have found that the state and national CF association websites from Australia or overseas from the USA, UK, Canada and NZ are good places to start. They will have lots of information that is easy to understand and might even have links to other useful and trustworthy websites too.
Sometimes I have been worried about what I’ve read too, so I’ve always found someone to talk with about the information and how I’m feeling. I encourage you to do the same. Your doctor is probably the best place to start. You can even bring along a copy of the information so your doctor can see what it says. They can tell you what information is correct and current and whether or not it applies to you. You might find that what you’re worried about is not a concern for you now and you can put it out of your mind. It’s your doctor’s job to answer any questions about your health in a way you can understand. Sometimes another member of your care team might be better able to help you like your physio, dietician, social worker or clinic coordinator.
If you are still worried, your parents, good friend or a friendly social worker can listen to how you’re feeling. Sometimes just talking about worries is all people need to feel less worried. There may be other things you can do to help you feel better too like going for a walk, doing something fun, watching a feel good movie or having a hug.
It’s important to remember that most things are often better than what we fear they will be. It’s also important to remember that everyone with CF is different – we all have different CF symptoms and can be more or less affected than other people we know. The information you read will apply to most people with CF – but not all people with CF.
Good luck looking for information! If you look in the right place and talk about any worries you should end up with the information that is helpful.
Interview from Rozee, 2014.