Living with Sarcoidosis: Insights and Support
Sarcoidosis, a condition that causes tiny collections of immune system cells (granulomas) to form in one or more organs in the body when triggered by bacteria, viruses, dust or chemicals, is estimated to affect between 150,000-200,000 Americans, and over 1.2 million people worldwide. With April designated as Sarcoidosis Awareness Month, Accessia Health aims to educate about the symptoms, risk factors, treatment options, and support management for those who live with sarcoidosis daily.
Signs and Symptoms
Symptoms of sarcoidosis vary, depending on which organs are affected and how badly they’re affected. Sarcoidosis sometimes develops slowly over time and causes symptoms that last for years. For most people with the diagnosis, the condition is found only when a chest X-ray is done. However, some may also experience general symptoms such as:
- Extreme tiredness.
- Slight fever.
- Swollen lymph nodes, such as in the chest, neck, armpits or groin.
- Weight loss.
- Pain and swelling in joints, such as the ankles.
Because sarcoidosis attacks various organs, there may be other signs that come from issues with your eyes, lungs, skin, heart, and even nervous system.
Cause and Risk Factors
While there is no definitive cause for sarcoidosis, researchers believe a person with a genetic predisposition for the condition may become affected after being exposed to elements such as dust, pesticides, mold, and other environmental and chemical triggers.
Though anyone can develop sarcoidosis, some factors may make you more susceptible to the condition. For example, the risk is higher among those of Black American and/or Scandinavian descent, as well as in anyone with a family history of sarcoidosis. Sarcoidosis is sometimes also linked to taking certain medications, including monoclonal antibodies for other inflammatory conditions or specific cancer treatments. Certain career choices can also come into play, like metal working, agriculture, and fire safety.
Treatment and Support
The main goals of treatment for sarcoidosis are managing symptoms, decreasing the risk of organ damage, and improving quality of life.
Corticosteroids remain the mainstay first-line treatment of sarcoidosis. They have been proven to improve overall disease control, symptoms, quality of life, and pulmonary radiology and/or delay disease deterioration. Patients may also be prescribed antimetabolite methotrexate (MTX), which has exhibited a higher success rate among second-line options managing disease control and steroids, tapering in about 65% to 85% of patients with persistent pulmonary sarcoidosis.
Because sarcoidosis can appear in different parts of the body, you may want to seek out individual support groups or organizations that advocate for the affected organ (i.e., if you have been diagnosed in relation to a breathing or lung issue, the American Lung Association is a good resource to connect to).
The Foundation for Sarcoidosis Research (FSR) also offers multiple programs to learn more information and connect with others:
Moving Forward with Hope and Support
Living with sarcoidosis can be unpredictable and challenging, but no one should face it alone. Whether you’re newly diagnosed or have been managing the condition for years, resources and community support are available to help you navigate the journey. At Accessia Health, we’re committed to raising awareness and building a future where individuals affected by sarcoidosis have access to the care and support they need.