Several years ago, I spoke at a great bleeding disorders conference in California. Around 300 people attended, and we all had wonderful interactions. The attendees engaged with one another and found hope in their shared experiences. I left the conference energized and proud to be part of such a…
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A couple friends came over for lunch last weekend, and one started talking to my youngest son, Caeleb, who is 14. Caeleb and I were both confused by this, because the conversation didn’t make sense. I realized that my friend had mistaken Caeleb for my older son Julian, who is…
Bioverativ and Bicycle Therapeutics will jointly discover, develop and market new therapies to treat hemophilia and sickle cell disease, the two companies announced. These future therapies will be based on Bicycle’s proprietary peptide development platform. “We believe our Bicycle platform has extremely broad therapeutic potential and we are excited to work…
The recommended treatment regimen for patients with severe hemophilia to prevent bleeding episodes is to replace the deficient clotting factor. However, currently available replacement clotting factors are limited by their relatively short half-lives and require intravenous injections up to three times a week to maintain protective levels. This can have…
Hemophilia in children is diagnosed at an average age of 9 months, and most children are diagnosed by their second birthday. If your pediatrician suspects your child has hemophilia, you may be concerned about their first appointment with the hematologist. To ease your worries, we’ve put together some tips to help you through…
On Monday, my youngest son, Caeleb, will begin his second semester as a freshman at the University of New Mexico. Last night he asked me if I had a few minutes to talk. I might not be the sharpest tool in the shed, but when my 18-year-old asks outright for…
I am a musician who has played in orchestra pits, wind ensembles, chamber groups, and orchestras. I even played antiphonal oboe one Christmas! Music is powerful. It transforms you and allows you to escape for a few hours from the regular happenings of the day. However, most people…
I took my youngest son, Caeleb, to the train station near our home this morning. He rides from our little town to downtown Albuquerque, about 30 miles from our house, to the University of New Mexico campus, where he’s a student. He has hemophilia and chooses not to drive.
For a long time, I didn’t think about exhaustion or how it would occasionally surface in my marriage to someone with hemophilia. As someone with attention-deficit/hyperactivity disorder (ADHD), I tend to function well in high-pressure situations. Urgency sharpens me. When there’s a problem to solve or a…
I am a big list maker. Each day I start with a list of tasks that I need to accomplish. I find it gratifying to cross through each item once I’ve completed the job. Grocery lists, errands, and meal ideas are some of the elements on my agenda. I also…