The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.
Search results for:
I recently saw an episode of “Family Feud” that made me nostalgic for the good old days — or what my nieces and nephews call ancient times. Contestants on the TV game show were challenged with naming outdoor childhood games from a time when cellphones, computers, and social media…
I think I need a Bubble Wrap suit. Yep — a full-sized, head-to-toe suit made of industrial-strength protective Bubble Wrap. That (not Obi-Wan) just might be my only hope. My medical records indicate that I’m a “fall risk.” As much as I hate seeing that, I get it. I fall…
The power of perseverance Marvel Studios is rereleasing “Avengers: Endgame” with new footage this Friday, June 28, in a final push to topple the box office record set by “Avatar.” Whether you are among those who consider the move to be thrilling, desperate, or a cash grab, it’s an…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…
Prednisone is a corticosteroid approved by the U.S. Food and Drug Administration (FDA) to treat many different conditions, including those affecting the skin, gastrointestinal tract, blood, eyes, nervous system, kidneys, lungs, muscles, and bones. It can be used to treat allergies, specific infectious diseases, and to prevent rejection…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
I view my biological clock as a stubborn, old mule. She dictates her pace, and getting her to change is hard. Real hard. She wants no part of the foolishness known as daylight saving time (DST). But the U.S. is among fewer than 40% of countries worldwide that…