Category: Patient Voices

Living a Sarc-Adjusted Lifestyle

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

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...
Coping with the Setbacks in Sarcoidosis

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...
Being an Engaged Patient: Staying Up-to-Date on Research

Being an Engaged Patient: Staying Up-to-Date on Research

In 2014, I was diagnosed with sarcoidosis during an unrelated ER visit for an auto accident. I had a chest x-ray to rule out a fracture from the seat belt, and unbeknownst to me, I had hilar and mediastinal lymphadenopathy. My journey with sarcoidosis began that...
7 Questions for a New Medication

7 Questions for a New Medication

Doctor’s visits while dealing with sarcoidosis can feel overwhelming. Sarcoidosis patients often have a lot of symptoms, medications, doctors, and other things to juggle. When you get to the doctor, it sometimes feels like there is not enough time to cover...
Life After Transplant: Two Stories of Cardiac Sarcoidosis

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!