Category: Patient Voices
Meet FSR’s Founders the Wilsons!
As part of FSR’s 20th Anniversary, we’re profiling some of the people who make everything we do at FSR possible, including our co-founders, Board of Directors, and staff. First up, meet our co-founders, the Wilsons! Andrea Wilson is a sarcoidosis warrior...
Traveling the World with Sarcoidosis
I had the good fortune this past summer to travel to Norway. Even more special than being in this gorgeous place was how healthy I felt on this trip. I was able to take walks with my husband, Jay, and our 15-year old son, Andrew, and paddle a kayak under the...
Life After Transplant: Two Stories of Cardiac Sarcoidosis
While cardiac sarcoidosis is diagnosed in around 2-5% of sarcoidosis patients in the United States, recent studies are causing some experts to estimate that the number may be as high as 20-30% of sarcoidosis patients in the U.S. Read about two patient’s experiences with cardiac sarc and heart transplants!
Living a Sarc-Adjusted Lifestyle
Since I was first diagnosed 6 years ago, sarcoidosis has changed my entire life, far beyond just my health. More so, it has impacted those around me, including my spouse, family, friends, healthcare team, and even people I’ve yet to meet. I have lost track of the...
Why Sarcoidosis Trials are Important
What is a Clinical Trial? A clinical trial is part of the research process used to help manage or treat a disease or condition. Trials typically occur after some baseline research into a new treatment has taken place and advanced research is necessary to move the...
September is Chronic Pain Awareness Month!
When most people think of sarcoidosis, what usually comes to mind is… ok, let’s start by correcting that – most people don’t ever think of sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, usually because someone...
Coping with the Setbacks in Sarcoidosis
If you have been with living with sarcoidosis for any amount of time, you know that this nasty disease will often kick you in the teeth and leave you frustrated just about every day. As a fellow sarcoidosis sufferer for about the last five years, I know that I wrestle...
Patient Perspective: Minimizing Sarcoidosis Is Harmful to Chronic Patients
Sarc warrior Dena experienced what many sarcoidosis patients are told at the beginning of their journey- that sarcoidosis wasn’t a big deal. So many patients hear phrases like “at least it’s not cancer” or “you don’t need to worry...