Spoiler alert: This story ends with a Golden Girl moment with my son. Picture it: Las Vegas, 2015. My youngest son, Caeleb, is 9 years old. He and I tagged along with my wife, Cazandra, for a special event for the bleeding disorders community. My boy, who…
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Two members of our local hemophilia community passed away in recent weeks. My husband, Jared, knew one of them, who succumbed to an iliopsoas bleed. The other was an older member of the hemophilia organization my husband works with. He had a stroke that led to bleeding in…
Sometimes a person must learn a lesson the hard way before making changes in their life. My youngest son, Caeleb, is 15, and he is discovering some truths about his body. Due to extensive damage in his right knee and ankle from hemophilia, simple things such as running and…
As my COVID-19 recovery continues, I have questions. So I called public health expert Frank James, MD, to help. James is active in teaching, research, and medical practice. He is the health officer for San Juan County and the Nooksack Indian Nation in Washington state. He is…
The back-to-school season is one of my favorites. Shopping for new school clothes, finding the right backpack, and getting school supplies are part of the tradition. As my son Caeleb enters his freshman year of high school, it looks to be the start of a vastly different year. There is…
“I don’t see blood, so you must not be bleeding.” For people with bleeding disorders, that kind of thinking isn’t just frustrating; it can be dangerous. Bleeding isn’t always visible or dramatic. It doesn’t always look like blood pouring from a wound or a bruise that appears immediately. For…
Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care. Over the years of raising two sons with…
“Pain” is a short, four-letter word, but its meaning is complex for those affected by chronic illness. For example, my youngest son, who lives with severe hemophilia, also known as factor VIII deficiency, once described the feeling of an internal bleed as sharp needles continuously attacking a joint.
Editor’s note: This story includes discussion of sexual abuse. If you or someone you know needs help, the RAINN national sexual assault hotline in the U.S. is available 24/7 by calling 1-800-656-4673 or texting HOPE to 64673. There is also an online chat at rainn.org/help-and-healing/hotline. Internationally, the University of…
First in a two-part series. I had never heard of hemophilia until the doctors came into my hospital room the day after my first son, Julian, was born. I soon learned that about two-thirds of those diagnosed with hemophilia are because of a spontaneous mutation. Simply…