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My husband, Jared, lives with severe hemophilia B and a seizure disorder. Despite these challenges, he’s active in ways that many people wouldn’t expect. He swims, lifts weights, and plays badminton. He can also keep up with our 5-year-old daughter, who is a huge ball of energy. We recently…

Many of us resume our schedules after the holidays, when we start a new year. We recommit ourselves to following a health plan or finding ways to let go of past hurts. Just to be clear, I didn’t say New Year’s resolutions. When we decide to redirect unhealthy behavior and…

At age 28, I received a diagnosis that changed the way I saw myself. Learning that I had attention-deficit/hyperactivity disorder (ADHD) felt like a missing puzzle piece finally clicking into place. Suddenly, everything that had once confused me about my life made sense: my struggles to stay engaged in tasks…

One of the most frequent questions I hear is, “How do I find community?” The question resonates deeply with me because, like many others in the bleeding disorders community, I’ve struggled with feeling isolated and misunderstood. Finding a sense of belonging has been a journey, one filled with trial…

In winter, when the trees no longer hold their leaves, and the cold and shorter days can make us feel like something has been lost, we can find in the peculiar evergreens a contrast to all those feelings of hopelessness. There is life still growing amid all that lifeless darkness,…

I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference? Answer: Beautiful business casual clothing and sensible shoes! I’ve had a love-hate relationship with shoes over my lifetime. From a very early age, my parents and pediatrician noticed my ankles…

Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others. While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want…

Earlier this week, my youngest son, Caeleb, and I parked my car and walked to the financial aid office at the University of New Mexico, where he’s a freshman. As we walked, we talked about him registering for the spring semester. He expressed concern that he wouldn’t get into the…

“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?” The…