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…
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6 Self-Care Tips for People Living With Hemophilia
Life with hemophilia can be challenging but with appropriate treatment and preventative self-care, many people living with the disease can live fairly normal lives. To help prevent bleeds and other complications, we’ve put together a list of six self-care tips for people living with hemophilia. MORE: Ten benefits of having…
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.
Dear Santa, It’s that time of year again: when the lights twinkle, music fills the air, and I start making my list. But this year, I’m not wishing for things you can wrap. These wishes are for the hemophilia and bleeding disorders community — the people I love and…
Sangamo Therapeutics and Pfizer have entered a global collaboration and license agreement to develop and market gene therapy programs for hemophilia A, including SB-525. SB-525 was cleared by the U.S. Food and Drug Administration (FDA) in January as an investigational new drug (IND) for the…
Parenting a child with hemophilia often means learning how to balance protection with independence — knowing you can’t prevent every bleed, but still wanting them to grow, explore, and feel like themselves.
I do not like to tell people that my sons are hemophiliacs. It is not that I am blind to the reality that they have a bleeding disorder, but my boys are so much more than a diagnosis. Why address them as if they carry a title or wear a…
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New Hemophilia Database Tracks and Updates Patient Clinical Data in Real Time, Trio Health Announces
Trio Health has launched a novel database with real-time clinical data of patients with hemophilia which combines information from medical doctors and pharmacies. The main aim of the database is to provide information on the treatment regimen to physicians in order to improve patients’ outcomes. Access to the database…
Ever since turning 30, I’ve been on a fast track toward self-improvement, determined to get the most out of life. I want to experience things meaningfully with my husband and daughter, doing things that bring me joy and fulfillment. But lately I’ve been feeling a bit disconnected from myself. That’s…