In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

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…

Pulmonary sarcoidosis is a sneaky character. Last week, I wasn’t feeling like myself. I was more out of breath than usual. I felt weak and could tell something wasn’t right with me. I had my son take me to the hospital, where I was admitted…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

I often am my own worst enemy. Well, sarcoidosis is actually my worst enemy. But I’d say I’m a close second. I know I need to take good care of myself on a daily basis. I am aware I need to do whatever it takes to sleep well and stay…

When it comes to managing sarcoidosis, rain feels like another obstacle in my day. And Mother Nature has been pouring down plenty of it in the Philadelphia area lately. Give me a day or two of wet weather and it’s unpleasant, but I manage. But being stuck in a seemingly…

My husband is heading out on an impromptu business trip. Coincidentally, his destination is just minutes from one of our favorite vacation spots. I could easily stay home, but I’ve decided to accompany him. He’ll be training a new hire. After that, we’ll leave one of his company vehicles behind…

I know that getting outdoors is good for my health and my sarcoidosis management. But the deeper we get into winter, the more I try to avoid it. Much like when I’m battling the hottest days of summer, a nature walk for me now is whatever I see…

I see my pulmonologist every two to three months to see how I’m doing with my pulmonary sarcoidosis management and to follow up after pulmonary function tests. Before I see him, I usually get a few…

I mentioned in a previous column my desire to embrace winter this year. As I’m writing this, it has been unseasonably warm here in the Northeast. Warmer temperatures help tremendously with my sarcoidosis symptoms, and for this, I am grateful. But I know the winter elements are still…