Last week, I took Caeleb, my youngest son, to the University of New Mexico Health’s urgent care center, which is on the same floor as the Ted R. Montoya Hemophilia Program and Treatment Center. He’d been experiencing stomach and head pain for five days. I figured he had a…
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There was a time when I couldn’t make plans because hemophilia was the center of my life. Vacations were dreams, family outings were few and far between, and the mundane happenings of everyday life were nonexistent. There was no sense of complacency. Every waking moment was consumed with the…
As a woman affected by the bleeding disorders hemophilia B and von Willebrand disease, I realize that increasing awareness about bleeding disorders in undiagnosed women and girls is essential. All women should be aware of the symptoms of a bleeding disorder and be tested if warranted. Bleeding disorders, even mild…
This week marks a change of seasons in the life of the church. With Ash Wednesday, Christians worldwide enter a time of Lent, a season of 40 days before Easter, to contemplate and discover the story of hope and how we find deliverance from the darkest parts of our…
March is Bleeding Disorders Awareness Month, when patients and families who live with bleeding disorders post facts on social media and share their stories to educate those with little understanding of how a chronic illness affects daily life. I have participated in numerous events to educate the community, and this…
I recently started seeing a psychiatrist again to confirm the state of my mental health. Though I haven’t been experiencing any serious symptoms lately, I thought it might be good to stay on track with my checkups. Thankfully, my new doctor offered me flexible payment terms, which encouraged me even…
Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…
I will never forget the years when my youngest son lived in the hospital more than he did at home. The stress that we felt as a family threatened to break us and wear us down. Date nights with my wife gave way to tending to emergency medical…
My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work…
It’s election season here in the Philippines, and two presidential candidates, both with large bases of support, are going head-to-head. In light of this, I came across a social media post reminding people to get out of their “echo chambers” and make their voices heard during this election cycle. The…
Recent Posts
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 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