According to a story from Sarcoidosis News, while the global challenge of the COVID-19 pandemic has been an obstacle for advancement in many rare diseases with trials and research grinding to a halt, real progress has been made in improving the lives of sarcoidosis patients in the last few months. In this story, we will talk about some of the newsworthy achievements that have happened and how awareness for this rare disease has also improved.
About Sarcoidosis
Sarcoidosis is a rare disease which is characterized by the appearance of unusual aggregates of inflammatory cells. These aggregates are called granulomas. The disease can affect almost any part of the body, but it most commonly appears in the lungs, lymph nodes, and skin. Unfortunately, the precise cause of sarcoidosis remains a mystery. The prevailing theory is that it is the result of alterations to the immune response following exposure to a certain trigger, such as an infectious pathogen. Certain genetic mutations, affecting BTLN2 and possibly HLA-DR, are considered risk factors. Sarcoidosis is also associated with certain autoimmune diseases. Symptoms vary depending on the organs affected but may include weight loss, fatigue, bone pain, cough, wheezing, shortness of breath, chest pain, skin ulcers/lumps, and skin discoloration. Symptoms are mild in most cases and many patients can control their disease with ibuprofen. Other treatments for more serious disease include steroids, glucocorticoids, antimetabolites, and immunosuppressants. To learn more about sarcoidosis, click here.
A New Treatment
One notable development appeared in March of this year when the US Food and Drug Administration (FDA) officially approved the drug nintedanib (marketed as Ofev) as a treatment for interstitial lung diseases, a group of illnesses that includes sarcoidosis. While there are other treatments available, a new option is always welcome news for any rare disease patient community.
Diagnostic Guidelines for Sarcoidosis
In April, The American Thoracic Society published official guidelines for medical professionals focusing on the diagnosis and detection of sarcoidosis. That month also saw a grant to the tune of $1.98 million be awarded to Wayne State University for the development of a diagnostic test. The grant was sourced from the National Institutes of Health (NIH).
A New Podcast
Thanks to the combined efforts of the Foundation for Sarcoidosis Research (FSR) and John Carlin, a news anchor for WSLS 10 in Roanoke, VA, the Sarc Fighter Podcast, dedicated to sarcoidosis and other rare illnesses, was launched. Check it out here.
