American graduate students, Erin and Erin (yes, there’s two of them) share their passion for disease ecology on “This podcast will kill you”. Catchy title! Recently they put together a very insightful episode all about cystic fibrosis. The episode is well researched, up to date, and easy to listen to. I highly recommend it.
There’s no denying it’s long. At 1 hour 45 minutes it’s the longest episode I have ever listened to. But it’s worth your time. In fact, I listened to it twice. The episode delves into the history, biochemistry and evolutionary genetics of cystic fibrosis, as well as covering promising new treatments on the horizon, like Amphotericin B. And very importantly, the hosts don’t lose sight of the human toll. The episode starts off a little dry, due to the initial biochemistry and genetics, but hang in there because it quickly builds momentum and provides fascinating insights from European folklore to gene therapy (some entertaining adverts pop up too). You’ll hear from Jay, a guy living in the united states, who loves making music and has cystic fibrosis. I connected with what Jay had to say about opportunity. He spoke candidly about how the disease has affected him physically and psychologically. He doesn’t gloss things over. The raw edge of his words moved me. Lsistening to Jay brought home how important universal health care is. Jay spoke about how he lost health insurance a couple of times which meant he didn’t have access to treatments. “It’s terrifying to know that you are one decision away from dying” he said. At one point, he charged $2000 to his credit card for medication after coughing up blood. We are fortunate to have medicare in Australia. But it’s important that we advocate for ourselves to ensure access to excellent healthcare is not eroded through insufficient funding. Even though I’ve read a fair bit about cystic fibrosis over the years I gained some fascinating new insights. For example, I had no idea cystic fibrosis was first described by a female doctor named Dr Dorothy Anderson in the 1930s. By the sounds of it she was an amazing researcher who overcame several obstacles (she was denied from becoming a surgeon because she was a woman). But Dorothy didn’t give up. She went on to do a PhD in endocrinology and worked as a pathologist in a paediatric hospital. In 1938 she described “cystic fibrosis of the pancreas” for the first time. She worked on cystic fibrosis for the rest of her career and her research led to development of the common diagnostic sweat test. I hope I’ve given you a taste of the podcast episode. I wish I had the skills of an excellent writer, however, I find words to be slippery little suckers. Just when I think I’ve got them together they slip through my fingers. So please, listen to the episode for yourself and share what you think. Knowledge is power! By Pia You can find Episode 34 Cystic Fibrosis: Complete Somatic Rebellion here.
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In this easy to watch doco, medical journalist, Michael Mosley, looks at the science behind getting fit. Do you really need to walk 10,000 steps each day? Where did that number come from anyway? Does HIIT actually work? And how do you stay motivated when it comes to regular exercise? Some of the answers will surprise you! The Truth About Getting Fit is available on ABC iview until Nov 10, 2019, so check it out and leave a comment below. Please keep in mind that the information presented in The Truth About Getting Fit is for a general audience. There is ongoing research about what amount and type of exercise is most beneficial for people living with CF. We hope to bring you some of the research findings soon so stay tuned. 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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