As someone living with hemophilia B and epilepsy, my husband, Jared, has faced numerous health challenges throughout his life. From medical tests to hospitalizations, he’s endured his fair share of pain and discomfort. So when I recently confided in him about an unsettling taste lingering in my mouth…

March is Bleeding Disorders Awareness Month (BDAM) and patients, caregivers, advocates, and other supporters are coming together to call attention to conditions like hemophilia and von Willebrand disease that impact more than 3 million people in the U.S. Bleeding disorders are marked by uncontrolled bleeding that occurs from a…

The singer onstage opened his mouth, and notes flew through the air, falling on the ears of everyone listening. His tone indicated a beautifully powerful lyric tenor voice as the song filled the space, hypnotizing the crowd. As he finished his first number, the crowd roared with joy. He…

My younger son, Caeleb, struggled to get to his feet and go to physical therapy today. His right ankle has very little cartilage because of hemophilia complications, and he often struggles to get around without the assistance of a cane or walker. He looked at me and…

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…

Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…

Tampa General Hospital’s cancer institute is the first healthcare center in Florida, and the third in the U.S., to successfully administer the first and only hemophilia B gene therapy, Hemgenix (etranacogene dezaparvovec), to a patient. “The infusion of this therapy is a hallmark of the TGH Cancer Institute’s…

Last year, at the Hemophilia Federation of America‘s Mild Matters Summit in Oklahoma, I attended a session led by physical therapist Nancy Durben that left a lasting impact. Durben guided a group on a leisurely walk, urging us to savor the experience — to relish the sound…

This week, my youngest son, Caeleb, visited the pediatric clinic for his last comprehensive exam there. My mind went in a million directions as I recalled meeting his hematologist, Shirley Abraham, MD. She witnessed the tough times when my son struggled through many painful spontaneous bleeding episodes because…

The new year isn’t exactly kicking off on a high note for me. At the end of last year, I headed to Schaumburg, Illinois, to spend Christmas with my family only for my dental crown to crack in half during the trip and decide to make…