About two years ago I had just started treatment for an M. abscessus infection. It was a very difficult time. An anonymous parcel arrived in the mail. It was a book titled “What Do You Do With A Problem?”. I remember sitting on the floor in our kitchen, my back against our old fridge, reading the book to my children and sobbing. Part of me felt angry. How dare this person trivialise my situation! But, after getting through the long treatment and finding perspective, I do agree. “Every problem has an opportunity for something good. You just have to look for it…It was an opportunity for me to learn and to grow. To be brave. To do something.” NB: I eventually did discover who sent it. It was my little sister, one of the sweetest, kindest people I know. And the Australian CF Hub came out of my personal health crisis. So, I’m searching for the opportunity in this COVID-19 crisis. I think it can bring the adult CF community together. I believe in all of us. I think we, as a group, have so much lived experience and knowledge that can be harnessed for the benefit of all adults with CF, now and in the future. Let's think of ways we can support each other to stay well and keep a positive mindset during this crisis. To get involved join the Australian CF Hub facebook group. https://www.facebook.com/groups/2950018355073670/ By Pia
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Should I self-isolate? Should my partner self-isolate too? For those with children: Should we take them out of school? Do we wait for the health authorities/government to make a call or be proactive now? These are the questions we (adults with CF) are all asking ourselves right now. Our decisions will be influenced by multiple factors. (Note: Many adults with CF have already put their personalised COVID-19 plan into action and taking steps to self-isolate).
We are trying to co-organise a Q&A session with CF clinicians and (fingers crossed) an infectious diseases expert for next week. In the meantime, here is some information from the Cystic Fibrosis Foundation in America. The American Cystic Fibrosis Foundation (CFF) recently released a statement on COVID-19. The key points (copied directly) are:
CFF have also recently released a FAQ that is worth reading. https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/What-Are-Germs/COVID-19-Community-Questions-and-Answers/ By Pia |
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The Australian CF Hub strives to present a diversity of viewpoints. We encourage respectful and open discussion. The views, thoughts, and opinions expressed in each blog post belong solely to the author, and do not necessarily reflect the views of the Australian CF Hub team or other adults with CF. Archives
May 2021
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