My son has his seventh port lodged on his left side, between two ribs, just below his chest. This one is his most successful port regarding the amount of time (two-plus years) and accessibility. When the doctor placed one of the earlier ports at “MacDonald the Younger’s”…
Search results for:
Researchers analyzed the patterns of bruising in children younger than six years old to understand the extent to which their inherited bleeding disorders, such as hemophilia, affected the number, size, and location of these bruises — and found that bruising in the youngest of these children may be an early…
Columns
The Last Bucket
I have a few rituals on Sunday evenings. I check to make sure clothes are washed and ready for the week, I set the menu so that we have a plan for dinner throughout the week, and I fill the infusing bucket and bring it to the…
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…
Enzyre is partnering with Takeda with a goal of developing at-home assays to help people with monitoring congenital bleeding disorders, including hemophilia, and to diagnose these disorders. This partnership builds on an existing, 2019 research collaboration between these…
Dear Doctor, We are concerned about the plan regarding our son’s treatment … The letter started out that way. Like many people, we lived in a culture that treated our doctors like gods. How dare we question anything! They had medical degrees, and we did not. Trust…
Every person is a walking compilation of stories that make up their book of life. As the mother of two sons with severe hemophilia, I have the privilege of watching their books develop. One of the most anxiety-filled chapters was when they first went to day care. Memories of…
I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value most: living a full and happy life. Jared has two chronic illnesses, hemophilia B and…
For decades, people with hemophilia have benefited from remarkable advances in treatment. Meanwhile, many people living with von Willebrand disease (VWD) have continued relying on therapies developed more than 20 years ago. Too often, VWD itself has been misunderstood or minimized. Even getting diagnosed can be complicated.
The National Hemophilia Foundation hosts an annual meeting with workshops, exhibits, and social gatherings for the bleeding disorders community. It’s a time when consumers, providers, and industry come together to support one another. When you have been in the community for more than 20 years, the best…