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!
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...
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...
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...
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...
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...
“The Actemra has been denied. We will start the appeals process.” These two sentences glare at me from the patient portal message center. I feel exposed and vulnerable. Here we go again. My doctor says I need this medication, but my insurance is saying “NO.”I was...
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...
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...
