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…
Search results for:
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. 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…
I can’t complain too much about my quarantine life. In my home are my husband, Joe, and 14-year-old son, Caeleb. There’s also my 14-year-old spunky, one-eyed, geriatric Corgi mix, Betty. I don’t have to worry about homeschooling little children or entertaining anyone. This is a good thing. But…
My husband, Jared, has a new resolution: to start keeping a bleeding journal. In his journal, Jared plans to write about recent bleeding episodes. Each entry will describe the sensation of a particular bleed, the affected area of the body, and steps he took to nurse the injury back to…
With all the issues surrounding the new coronavirus, I can’t help remembering about 15 years ago when we faced the possibilities of a medical shortage in the bleeding disorders community. A shortage of factor VIII meant that many in the hemophilia population faced a lack of medicine to…
Our world is changing. Shelves are partially stocked, hugging friends is discouraged, church services are online, and we study and work remotely. We crave connection. Things will improve eventually, but that seems a lifetime away. Finding routines and things in our lives that are “normal” is not always easy,…
COVID-19 has upended our lives. It is hard. As an individual with a chronic condition, I find myself worrying about how it will affect me in ways that may be different from those of my neighbors or co-workers without chronic conditions. Thankfully, the hemophilia community has…
“I wish your ab would be better now,” I tell my husband Jared in a pleading voice. Jared is recovering from a bleed in the abdominal region that has taken a toll on his mobility for the past week. He’s already gone through a couple of factor infusions but still…