What happens when a symptomatic hemophilia carrier needs minor surgery? Will her increased risk of bleeding be recognized? The story of Kim H. came to my attention on Facebook. She is 39 years old and lives in Pennsylvania. I recently interviewed Kim over Zoom, as her story is important.
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One of the unexpected issues I struggled with when my youngest son, Caeleb, faced many prolonged hospital stays due to internal bleeding episodes was loneliness. My wife, Cazandra, and I divided our time between the hospital and home life with our older son, Julian. As a result, we…
My husband, Jared, and I have maintained a small garden on our balcony ever since we moved into our new home. We started out with just a few potted herbs, and as time went by, we expanded our collection to include some ornamental plants and flowers. Jared is a wizard…
It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…
I love the final-night event of a national bleeding disorder conference. Different groups invite community members to play games, the meal is remarkable, and the dance floor begs for us all to gather and celebrate. After the highly informative events offered by leaders in the bleeding disorder community, friends…
My biggest fear for my sons, who live with severe hemophilia, is an auto accident. When my oldest son, Julian, began to drive, I impressed upon him anew the importance of wearing a MedicAlert emblem. He wore it like dog tags for years when he was younger,…
Recently, my husband, Jared, and I stumbled upon a local shoemakers’ trade bazaar at the city hall. We just moved to a new home in a brand-new city at the start of the year, and Marikina just so happens to be the “Shoe Capital of the Philippines”! One thing…
Growing up in suburban Milwaukee, I saw the world through a self-employed lens. My grandfather sold and repaired typewriters, a business he started in downtown Chicago in 1951, a time that must have been most colorful. My family settled in Milwaukee, where my father became the largest independent distributor of…
Affirmation: one word with significant connotations. From the day we come into this world, we seek an acknowledgment that our presence on this planet matters. To be affirmed by those around us reinforces the idea that our contributions to our community hold special significance. When we hear others give…
I’m late getting my garden ready for the season. I considered giving in and leaving the weeds and remnants from last year’s harvest for another season, but seeing the butterflies and bees come to my space and picking fresh vegetables brings me too much happiness. So I enlisted my husband…
Recent Posts
- How practicing gratitude helps me cope with my bleeding disorder
- Lower-dose gene therapy effective in severe hemophilia A: Study
- Our family’s travel planning looks a little different these days
- Embracing the strange signals that come with a bleeding disorder
- Who am I? A woman with a bleeding disorder. See me. Believe me. Treat me.