April is Sarcoidosis Awareness Month: Spreading Rare Disease Awareness

The month of April is recognized as Sarcoidosis Awareness Month, a time for spreading awareness about sarcoidosis among the general public and the medical community. The Foundation for Sarcoidosis (FSR) Research is organizing a suite of informative events featuring wellness activities and world-renowned sarcoidosis experts. The organization also has valuable tips and tools that can help you spread awareness about the disease in your local community.

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 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. This disease 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 and 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 the disease, click here.

There are a number of ways that you can get involved in this year’s Sarcoidosis Awareness Month. Some of these methods include:

  1. Joining the FSR’s community by signing up for events and their newsletter.
  2. Are you living with sarcoidosis? Then don’t hesitate to share your story. Patient testimony is a powerful force in spreading awareness.
  3. Participate in the Steps for Sarc Virtual Endurance Challenge. This virtual fundraiser challenge will connect patients from around the world. Click here to sign up.
  4. April 13th is World Sarcoidosis Day. Wear purple and take to social media to spread the message using the hashtags #StopSarcoidosis and #WorldSarcDay. Click here to learn more.
  5. Use social media to amplify your voice.

For more info about Sarcoidosis Awareness Month, a full list of the month’s events, and to access FSR’s social media toolkit, click here.

 

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