Category: Patient Voices
Ask The Ambassadors: Hard Conversations with Friends and Family
We reached out to our patient ambassadors and asked for their advice on having hard conversations with friends and family about sarcoidosis.
The Role of Functional Medicine in Chronic Illness
Any time you’re in a conversation with patients with chronic illness, the topic of alternative treatment is bound to come up. For people who live with constant pain, fatigue, and other burdens of being ill, it may seem to make sense to turn to these kinds of...
Feeling Grateful
Last year we asked FSR Ambassador, Mark Landiak to share what he was grateful for during the holiday season. A year later it all still rings true. When FSR asked me if I’d write a blog on what I’m grateful for, I almost didn’t know where to start. I’m often up...
Backbone: Living with Chronic Pain without Turning into One
Sarcoidosis patient and FSR Board of Directors member Karen Duffy has published her second book full of wit and wisdom on living with chronic illness. “Backbone: Living with Chronic Pain without Turning into One” is currently the #1 Best Seller in the...
3 Tips to Beat Stress While Playing the Waiting Game
Be patient. That’s what I tell myself, again and again. It’s easier said than done when you are waiting to feel better. I was “officially” diagnosed with sarcoidosis in January 2013. Like many people with sarc, I had mysterious symptoms for years until a lung...
Leaving My Legacy
As a relatively younger woman (ok …in my 40’s, but that is all I am saying!), I certainly do not spend a lot of time thinking about my own mortality. And yes, I DO battle sarcoidosis every single day, but I refuse to let this disease dictate my spirit of life and...
Patient Ambassador Advocates for In-District Lobby Days
During the month of August, while congress members were back in their local districts, Rare Disease Legislative Advocates organized their annual “In-District Lobby Days,” helping rare disease patients connect with their local representatives to meet and...
VIDEO: 9/11 First Responders and Sarcoidosis
On September 11, 2001, life for Americans was forever changed. After the attacks on the World Trade Center, countless men and women sprung into action and selflessly risked their lives for rescue and recovery missions and to help clear the debris. These selfless first...