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Volunteer Advocate
cf insights cf insights

What’s unique about living with a rare disease?

We know can be frustrating to live with a rare disease that is not well known, but it does come with a unique perspective and opportunity to educate. We asked our community what they find unique about living with a rare disease; this is what they had to say:

  • “It’s something unique.” – Mackenzie Norris
  • “I love having the opportunity to teach people about CF and the concept of ‘invisible illnesses’. I think it’s great to be able to educate people from a personal perspective about something that they so rarely encounter in their day-to-day lives. Having a “rare” disease helps me to provide a fresh perspective on things.” – Terra Stephenson
  • “One thing would have to be the insight into life in general, and noticing everything much more than I think some do.” – Nicholas Evans
  • “The (often but not always) invisibility of CF. There are times when I find it so challenging explaining the limitations CF forces upon me, especially to people who don’t know me and have never heard of CF.” – Kim Wood
  • “I find it unique in the sense that growing up I knew no one else who had CF. In my mind, I was the only person living this way. I’m so happy that now with social media I, and others, have found a safe network of online CFers with whom I can talk, and share, and complain, and get advice from. It’s still weird not knowing anyone in person who is going through what I do, but I’m so thankful that I’ve learnt to advocate and raise awareness for why I do the things I do.” – Chelsea Gagnon

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