Darcy takes over the annual gift guide this year! Make sure you select the BOOMER ESIASON FOUNDATION if you’re using Amazon Smile. Amazon will donate a portion of their revenue from each Amazon Smile sale to BEF! Do you have a loved one on your holiday shopping list who has a chronic illness? This gift...
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On Monday, I spoke about disease disclosure in very general terms as it may relate to someone’s health. Today, Darcy talks about disease disclosure within the context of dating. The #1 dating question I see in the cystic fibrosis community is, “When do I tell someone I’m dating about CF?” The conflict goes something like...
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This article originally appeared on Julia Rae Unplugged and has been reposted with the author’s permission The trailer for “Five Feet Apart” was released on Friday. Within a day, the Facebook clip alone has close to 4 million views. Many people see that as a whole lot of great cystic fibrosis awareness. I challenge that. Awareness that comes from...
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Amy closes up her Drug Development Wednesday column with describing how people with CF who have Medicare without Medicaid, Low Income Subsidy, or another secondary insurance can wind up paying a substantial amount for CFTR Modulators. These folks are DENIED manufacturer co-pay assistance because of a long standing federal law The last two articles I spoke about...
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Darcy is back with her guest column to chat with you about talk to kids about CF! In the spirit of Halloween, please take note of the above picture of one of my first Halloween costumes from my childhood! This post is inspired by Megan Barker, founder of Project CF Spouse, who I was fortunate...
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Amy is back with part two of her discussion concerning access for CFTR Modulators. Today we take a look at what’s preventing people with CF from gaining access to Orkambi in the United Kingdom I’m a DF508 heterozygote and therefore don’t have a CFTR modulator that will work for me (hopefully late 2019 it will...
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Happy #WorldMentalHealthDay!!! One of the best days of the year!! Gunnar likes to describe the three pillars of CF care as: Respiratory Care Gastrointestinal/Nutritional Care Mental Health Care If one of the three pillars are not being addressed, health as a whole suffers. But let me tell you, Gunnar did not always think this way....
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