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Volunteer Advocate
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Advocating with your CF Team

We’ve been told by doctors, parents, and people living with CF, that one of the largest hurdles in transitioning to adult care is self-advocacy. So here are some tips from people who have been there:

  • “Sometimes you need to compromise. Be involved in your own care. When your care team sees that you are aware of your history, symptoms and body’s reactions then they will pay more attention. Also this needs to be taken into consideration for other hospitals and emergency rooms. Always have you main clinics phone number with you so that you can give it to doctors to connect with your main team if they have questions or need previous records. It also helps to have a partner or parent who can fight for your care when you are not capable.” – Rob Burtch
  • “You are your best advocate. I’ve always heard from doctors that CF patients know their own body better than anybody else, and that is completely true. If you disagree with a treatment plan or feel like your current regimen isn’t working…speak up. You are not a burden, so make sure you are heard. You will look back one day and be very glad you spoke up for yourself. So much of what we face with CF is out of our control, but advocating is something completely up to you!” – Meaghan MacRury
  • “I’m very honest with my CF team. If I don’t agree, or feel I need something different I let them know. They are good at working with me to give me the best care.” – Mackenzie Norris
  • “Do your research! Learn as much as you can about CF, your medications, your therapies, and the medical system where you live. Ask questions whenever there is something that seems unclear or not quite right, and pay attention to your body so that you can accurately communicate what is going on. If you live in BC, I also recommend using the online service called My eHealth – this is a website that allows you to view and track your own lab results, and is a great way to make sure the team catches any new infections.” – Terra Stephenson
  • “Do not be afraid to question why you are being prescribed a treatment. You need to understand what treatments and medicines you are taking and their possible side effects. If something doesn’t feel right, don’t be afraid speak up. Work with your team, they are there to assist you. If you want to try new or alternative treatments, talk to them first to make sure it will do no harm.” – Brenda Chambers Ivey
  • “Speak up speak up speak up! You know your body best; you’re the one living in it. Never hesitate for speak up about something you may feel hesitant about, and speak your mind. Your team is there to help you, not just your lungs. They care about your quality of life, so let them in.” – Chelsea Gagnon
  • “The team is there to help; offer full disclosure about yourself and issues you may be having because it will only benefit you in the future. Continue to educate yourself. Learn more about your illness, how your body responds and what proactive measures you can take. If you are not sure, ASK. Keep notes or a journal documenting how you respond to treatments. Make a list of questions as they arise and consult the team when in clinic. Once again, be thankful, patient and kind; these professionals are offering you amazing care, compassion, and help.” – Alexander McCombes


Have insights you would also like to share? To be quoted on our blog please contact Terra at tgillespie@cysticfibrosis.ca