Articulating risk tolerance is hard. It is especially hard during the coronavirus pandemic because we all have competing levels of risk tolerance. It requires a certain degree of vulnerability and deep personal understanding. Our priorities are different across the board. How do we value personal security vs. the security of a loved one… or a...
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In the spirit of cystic fibrosis awareness month, one of the most important things we can do as patient and family advocates is communicate effectively about the disease condition that affects our lives. From the outset, many of us lack formal medical education (me included!) and without that, it can be challenging to talk about...
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We all know someone… someone in our lives who is living in blatant disregard for social distancing. For no good reason, too! They are not an essential worker, nor are they contributing to constructive economic activity. Watching it from a far elicits… a complex emotion. You know who I am talking about. We see them...
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One of the benefits of having cystic fibrosis (if there was ever such a thing…) is that it is quite easy for our clinics to report, collect and analyze patient data all over the world. The Cystic Fibrosis Patient Registry (despite some of my issues with it) has the ability to quickly collect data allowing...
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I write with good news! Our pleas have been heard and some of the discriminatory policies or proposed policies that explicitly list cystic fibrosis in triage guidance are being challenged or have been reviewed. I have updates from Wisconsin, Vermont and finally a national position from Cystic Fibrosis Foundation. It is CRITICAL we continue to...
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Darcy is back on the blog! Fertility treatments are one of those elective procedures that have been canceled because of the pandemic. It makes sense, of course, but it’s one of those crazy domino effects of the virus. It’s weird to think that there will be different children born at different times because COVID19. I’m...
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Are we living in a world that is not adequately valuing our lives? We might be. Within the context of triaging care, our society is discovering that some of the very worst policies imaginable are still on the books. “Policies and guidelines in five states — Alaska, Florida, Oklahoma, Vermont and Wisconsin — specify that...
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