What’s new, month of May? Why hello there, extended coronavirus lockdown! Â Our community quarantine was set to end on April 30. In the last few days of April, I felt so excited to go back to how life was before COVID-19. I missed going out, eating…
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As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
Losing family members is hard. Long-lived lives that come to an end, distance that prevents relatives from remaining close, and estrangements following family squabbles are a few ways to lose family members, and it can be devastating. Yet we manage to pick ourselves up and go on with our lives,…
Columns
Why We’re Planning to Get a Dog
My husband, Jared, and I recently talked about getting a dog. I’m excited and can’t wait. We spent an entire night flipping through pictures of various dog breeds. We finally managed to narrow down our selection to four possible types. At the top of the list is the Cavalier…
Genentech has issued a notice reminding healthcare professionals that its hemophilia A treatment Hemlibra (emicizumab) can interfere with some laboratory tests that measure blood coagulation. In the event that hemophilia patients on Hemlibra become infected with COVID-19, the company warns that not all tests will…
1. Why is this survey being conducted? The purpose of this survey is to gather information from individuals with hemophilia so that Bionews and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger hemophilia community. 2. What will I do? If…
Why is this survey being conducted? The purpose of this survey is to gather information from individuals with hemophilia so that Bionews Services and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger hemophilia community. What will I do? If you…
If I had to define my self-quarantine in one word, it would be peace. I live in a peaceful, small, rural town. My street is quiet and my porch has a wonderful view. Three of us are at home — my husband, one of my sons, and me. My…
Columns
Focusing on Myself to Stay Sane
My husband is down with a bleed for the second time since the COVID-19 quarantine began. Â It hasn’t even been a week since he recovered from his latest abdominal bleed. We were only starting to settle back into our usual routine. I was happy to…
Columns
The Lure of the Open Road
“A River Runs Through It” is one of my favorite movies, but calling it that doesn’t conjure up just how deeply I feel about it. This movie is more than a favorite — it is like a cherished dream. With Robert Redford’s voice richly narrating the story of…