“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.
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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…
In honor of Bleeding Disorder Awareness Month, celebrated in March, CVS Health is donating more than $260,000 to national and local hemophilia and bleeding disorder programs across the United States. Although there’s no exact number of how many people are now living…
I have carried a pocket calendar since my junior high school years. I recently came across an old calendar from 10th grade. Pictures of playful puppies were on the cover, and ticket stubs were tucked inside the sleeve. I was overwhelmed by memories of my younger days and the happiness…
This past week my adult son, Julian, made a decision that I didn’t like. I wanted badly to tell him how I felt and that his choice may not be in his best interest. I don’t think it’s essential to mention what he did as much as my reaction to…
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…
As my husband, Jared, and I grow deeper in our marriage, the reality that we will spend our entire lives with chronic illness becomes increasingly clear. Jared has severe hemophilia B and a seizure disorder, which I learned about when we started dating. Meanwhile, I was diagnosed with…