My dear husband, I won’t do everything for you. I may take on some of your physical responsibilities when your body says “no for now,” but I’ll leave you to do all the thinking and strategizing you can do for our family. You may have hemophilia and a seizure disorder,…

Joint pain significantly rose and overall joint health — particularly range of motion — diminished with limitations on physical activities during the COVID-19 lockdown for people with hemophilia and joint disease, a small study from Spain reported. The study “Musculoskeletal Changes in Hemophilia Patients Subsequent to COVID−19…

In past columns, I wrote about the benefits of creating a medical road map to keep everyone involved in my son’s hemophilia care on the same page. This collegial approach included data from medical, educational, and personal perspectives, allowing us to form a rich assessment of my stinky boy’s…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Are caregiving and parenting the same? Caregiving is the activity or profession of taking care of one who is sick or disabled. A parent is one who brings up and cares for another. As the mother of two sons with hemophilia, I believe that caregiving and parenting are not…

In the past few weeks, I haven’t been feeling as productive as I normally do in terms of work. In fact, as I type this, I’m sitting in front of my brand-new work desk in a sports top and ripped jeans — not my usual outfit when I’m…

My youngest son suffered his last joint bleed from hemophilia over seven years ago. Gone are the days when he could not walk, and a wheelchair was the most accessible way for him to get around at school and family outings. I work at a church that knows my…

As part of a Coalition for Hemophilia B contest, people with hemophilia B, their siblings, and caregivers are  invited to design a comic or coloring book that tells a story about how they manage this rare blood disease. There will be a $500 award for winners in each of…

GenScript ProBio and Neoletix Biotechnology have entered into an agreement for clinical and commercial production of a lab-made version of coagulation factor VIII, a product that the companies hope will make the preventive treatment for hemophilia A more accessible to patients in China. Coagulation factor VIII, or FVIII,…

Optimization of investigational hemophilia B gene therapy led to more than 25 times the production of factor IX (FIX), the blood-clotting protein that is missing in people with the condition, a study has found.  According to researchers, these findings support the…