Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit…

It started the fall of my daughter’s sixth-grade year in school. While I had listened to DJ Elliot Segal of the radio talk show “Elliot in the Morning” for nearly 20 years by then, I’d done so mostly solo. My husband found no value in the show, and I…

Before having children, my definition of a season of life did not contain color. Everything appeared black and white. If there was a medical issue, it lasted for a little while and soon passed. Nothing remained for long. The most significant medical problem I faced was when I broke my…

Many people see spring as the season for cleaning. Winter months call for homes to be closed tightly to keep the heat in and the winter chill out. Spring allows for the opening of windows to clean the soot and grime that accumulates over the colder season. I normally do…

Lately I’ve been feeling stuck. My life seems to have taken on the appearance of an infinite to-do list. The moment I tick off a box, three more appear. Every day, I am literally out of breath running errand after errand, with the ultimate goal of somehow staying afloat. Bills…

Long a food literature devotee, I continually marvel at the seeming effortlessness with which authors, home chefs, and Michelin triple stars approach the kitchen. Their sense of matter-of-fact wonder at gathering simple or impossible-to-find (except in a French market) ingredients simultaneously fills me with awe and consternation. How did these…

AMT-061 (etranacogene dezaparvovec), an investigational gene therapy uniQure is developing to treat hemophilia B, successfully increased factor IX (FIX) activity and controlled bleeding — while markedly reducing the need for other treatments — in the Phase 3 HOPE-B clinical trial, top-line data show. These findings will be presented at…

Exhaustion, stress, loneliness, and boredom are a few symptoms of living in our current world. Some people easily adapt to new ways of moving in the world, and others have a more difficult time. What is amazing is how the rare disease/disorder community seems to move forward without skipping a…

I have struggled with anxiety and depression since my early 20s. Fortunately, my mental health is in excellent shape thanks to medications and therapy. These two aspects of care are necessary for me to be the best person I can be, not only for my family but also for…

I’ve grown quite fond of collecting eyeglasses lately. Stay-at-home boredom compelled me to start a vintage fashion modeling hobby, and suddenly a necessary medical appliance became a means for me to express myself. I enjoy matching my eyewear to my outfits, and in the process, my collection has grown. When…