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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…

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.

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…

I’ve generally had an all-or-nothing mindset when it comes to working out. In the past, anything under 30 minutes would feel like a waste of time. The problem with my fitness regimen has been sustainability and consistency. However, I’ve found that starting slowly and gradually building up has been effective…

Change is inevitable — like it or not, it’s a part of life. The seasons change and bring a crispness to the air or warmth after the bitter winter cold. Jobs change and we are given new responsibilities and challenges. Change happens throughout our lives, and we must move forward…

1. Why is this survey being conducted? The purpose of this survey is to gather information from individuals with hemophilia so that Bionews and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger hemophilia community. 2. What will I do? If…