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.

An employer once asked me what was the one wish I wanted granted. Having battled sarcoidosis for years while in the workforce, the answer came easy. I asked for the option to telecommute. At the time, my wish didn’t come true.  June 11 is National Work From Home…

ATYR1923, a candidate therapy for pulmonary sarcoidosis, binds specifically to the neuropilin-2 (NRP2) receptor protein, which is located at the surface of immune cells responsible for inflammation and granuloma formation in lung sarcoidosis, the treatment’s developer, aTyr Pharma, has announced. These findings are described in two posters,…

Sometimes in relationships flaws become too glaring to ignore, which either leads to compromise or goodbye. That is now the case in my long love affair with meat.  I’ve made sacrifices over the years. My dates with the bad boys (red meat) aren’t nearly as frequent now.

Runny nose, sneezing, coughing, and itchy, watery eyes. Getting a breath of fresh air ain’t what it used to be. Spring allergy season is underway in the U.S. And it’s going to be a lengthy, brutal stint for those of us in the East, according to AccuWeather meteorologists. …

I felt vindicated last year when researchers reported Lyme disease could potentially trigger sarcoidosis. I’ve been trying to get physicians to see a link between the two for years. I used to expect some dramatic “aha” moment when I reported that my sarcoidosis arrived a year after my Lyme…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

Every day is a new adventure, and this pandemic certainly has been challenging. Every morning, I give thanks for seeing another day. I ask to become a better person than I was the previous day. I also give thanks for my family, and believe it or…

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

On April 28 of last year, I had one thing on my mind and it wasn’t my sarcoidosis. I was crammed in a movie theater for “Avengers: Endgame” learning the fate of my favorite superheroes. Filling theaters in record-breaking numbers may now be a thing of the past. But, what…