My oldest son, Julian, is preparing for a big audition. He hopes the casting director will hear his submission and ask him to go to New York for a final, on-site callback. If the powers that be select him, he’ll perform in his first national touring production. My son displayed…
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Planning a pregnancy with hemophilia can bring up a lot of questions. While many pregnant women with the condition don’t experience major complications, careful planning and comprehensive care are needed to ensure the best outcomes for you and your baby. Learning about hemophilia and pregnancy, including…
Julian MacDonald opens up about life with severe hemophilia A, from early diagnosis to the financial and insurance challenges he faced in adulthood. He shares how leaning on pharmacists, care teams, and the broader hemophilia community became essential to understanding he didn’t have…
My heart raced and pounded as a bead of sweat rolled down my cheek. My chest was so tight that it hugged my heart, which seemed to be doing flips. What was happening to me? I wanted to run away. I wanted to stay and hide. I wanted to scream…
In addition to its clinical challenges, hemophilia is characterized by a major economic burden that affects patients, care givers, the healthcare system and society. In a recent report, Sheh-Li Chen, PharmD, from the University of North Carolina Medical Center, identifies the most significant areas of healthcare hemophilia management, highlighting the importance of the…
Scientists have developed advanced liver organoids — lab-grown “mini-organs” that mimic the function of organs in the body — that are capable of growing their own functional blood vessels and producing clotting factors that could eventually be used to treat hemophilia, according to a study. In a mouse model…
Despite having lower oral health scores, children with hemophilia showed no differences in oral health-related quality of life compared to children without the condition, a study found. The study, “Parent’s report on oral health‐related quality of life of children with haemophilia,” was published in Haemophilia. Hemophilia is a…
Intimacy. Warmth. Comfort. Security. Closeness. These are things that many of us yearn for in relationships. However, when someone has a bleeding disorder, relationships can also be associated with other things, like fear, pain, embarrassment, and shame. Sexuality is hard to discuss,…
When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years after his older brother did, but reducing oversight of infusing to one child proved liberating. Before the Younger’s independence, my wife and I still actively participated…
One of the main hemophilia symptoms is excessive bleeding, which can occur into the joints. This type of bleeding can lead to joint damage, or joint arthropathy. Joint damage can limit movement and the ability to exercise for people living with this bleeding disorder.