Category: Living with Sarcoidosis
Why Sarcoidosis Awareness Month Matters
As the nation’s leading nonprofit organization dedicated to sarcoidosis, we believe in the power of community and that game-changing results in sarcoidosis research can be made when we work together. Sarcoidosis is a rare disease, all too often misdiagnosed and...
Becoming an FSR Patient Navigator: Stories of Resilience and a Desire to Make a Difference
You are not alone. The journey of sarcoidosis feels lonely sometimes. After months or even years of misdiagnoses, difficulties of excusing yourself from events or activities, confronting challenges associated with going to work each day or caring for your family, and...
Sarcoidosis and COVID-19 Survey Update
COVID-19 has changed our world. As of October 1, 2020, the Johns Hopkins University Coronavirus Resource Center reported over 35.5 million individuals worldwide have been infected with COVID-19, including over 7 million in the United States. There are about 200,000...
Self-Care for Sarcoidosis Warriors
Sarcoidosis patients are used to talking about their physical complications, since both the disease and its treatments can cause so many physical symptoms. Chest pain, aching joints, debilitating fatigue, shortness of breath, or whatever else your most recent flare-up...
Sarcoidosis and Quality of Life: A Dissertation
Since sarcoidosis is a rare disease, there is a lot we don’t know about it. Scientists are working diligently to figure out the cause of sarcoidosis as well as find drugs that can be used to treat it. We already know how important these clinical trials are for...
How Does Sarcoidosis Affect Relationships?
We already know that sarcoidosis can have a significant impact on a person’s quality of life. Sarcoidosis patients often live with debilitating fatigue, pain, and other symptoms that result in a life much different from the one they had before their diagnosis. There...
Why Am I Not Eligible? Understanding Exclusion Criteria for Clinical Trials
Clinical trials can be an exciting opportunity for patients to try a new drug or treatment and see if it helps their sarcoidosis symptoms. These trials are important because they advance sarcoidosis research and bring us closer to finding better treatment and a cure.
Buyer Beware: “Miracle Cures” for Sarcoidosis
You may hear a lot of advice from many different sources on how to treat sarcoidosis. It probably feels overwhelming at times – especially when a lot of this advice is contradictory. Your doctor doesn’t necessarily know everything, so doing your own research is an...
Prednisone and Weight Loss
Dealing with weight gain cause by prednisone is hard, here are some diet and exercise tip help combat this side-effect.