Dear hemophilia, Truth be told, I hate you sometimes. I especially hate you when you suddenly pop out of nowhere and find ways to ruin my husband’s life. I hate you when you encroach on plans made weeks in advance; long-standing plans that were carefully and painstakingly thought out. As…
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Special days come up: holidays, birthdays, and vacations. We take time to relax and enjoy ourselves, but there is always something staring us in the face. Needles do not care what days may be essential or ordinary. They call to our families, reminding us that hemophilia does not…
My local hemophilia organization just held its annual Christmas party. During these celebrations, we are reminded that we belong to a community that empowers, cares, and provides us with support and service. Christmas is a time for giving, showing gratitude, and spreading love. During our Christmas party, it was heartwarming…
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Reaching Out and Inspiring Joy
I vividly remember attending my first bleeding disorder conference in 2008. It was overwhelming. The exhibits had products and services that my son would need, and the workshops and topics were new and very unfamiliar. The attendants seemed like they were at a family reunion! How did they…
These past few days have been extremely busy for my husband Jared and me. We decided to rent a couple of commercial booths at the barangay (or district) hall for the duration of our town’s weeklong fiesta — one dry goods stall for us and one for my…
My profession as a pastor allows me to celebrate with and be a source of support to members of my church. They come to me seeking a message of hope in the worst of circumstances. And the need for peace is greater when one faces surgery. When asked,…
At this time of the year, I like to clean. Not just dusting and mopping, but also purging my home of unnecessary items. Unworn clothes, worn-out shoes, and overwhelming stacks of papers and magazines. The other important area that needs a thorough inventory is my home medical supply…
The Thanksgiving holiday is upon us. It’s my favorite time of year. Family feasts, playing games, going to the movies, and watching football are some of the traditions that many of us hold dear. One Thanksgiving tradition my family keeps is that each person at the dinner table…
Today, I became my husband’s dependent — officially. A few months ago, I wrote about being ineligible for health insurance because I was already five months pregnant when I applied for it. My only option was to register as my husband’s dependent. That meant he would have to share…
One Thanksgiving season, nothing seemed to go right. Both of my sons suffered in completely different ways. “MacDonald the Older” faced bullies who looked forward to nothing more than terrorizing him, while “MacDonald the Younger” faced hospitalizations that lasted for lengthy periods. Hemophilia took its toll on both…
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- 17-year-old advocate shares her NMOSD story to raise awareness
- Accommodations won’t keep us from enjoying a day at the museum
- I unpack the past with hemophilia and discover the strength of my adult son