Sarcoidosis is often referred to as a "snowflake" disease because every patient experience is unique. It may affect different organs, causing different symptoms, which can vary in severity over days, weeks, months, or years. While there is a great deal still unknown about this rare disease, there is still so much that we can learn from the experts, and from each other.
What Is Sarcoidosis?
Sarcoidosis is a rare inflammatory disease that can affect anyone in any way. Clusters of inflammatory cells called granulomas build up within the body; depending on where these granulomas form, they can interfere with the functioning of that organ or system.
Patients can also experience systemic symptoms, such as fever, chills, fatigue, and more.
Is it Serious?
This is a tricky question, and the best answer we can give is it can be.
There are some sarcoidosis patients who have minimal symptoms, and whose conditions resolve (go into remission) on their own.
Depending on which organs are involved and how severely, this can be a much more serious chronic disease. When the lungs, heart, or nervous system are involved, or when the granulomas progress to fibrosis, it can be much more serious.
Sarcoidosis can be difficult to diagnose because the symptoms mimic so many other conditions. As a rare disease, it's not usually the first thing doctors think of; rather it's a diagnosis of exclusion, after other conditions are ruled out. Still, there are a number of diagnostic tests and procedures that can help lead doctors down the proper path to a diagnosis of sarcoidosis.
At this time, there is no cure for sarcoidosis. Treatment is geared towards managing symptoms and minimizing inflammation. This generally includes a combination of corticosteroids, immune suppressants, and antimalarial medications. The Foundation for Sarcoidosis Research's Scientific Advisory Board created a protocol that can be especially helpful for those who do not have as much experience treating sarcoidosis.
Who Gets Sarcoidosis?
While sarcoidosis can present in patients of any age, race, sex, etc., it is worthwhile to note the incidence of the disease within these groups. Sarcoidosis seems to present more frequently in African Americans than in other ethnic groups, and more often in women than in men.
Though there is not a direct hereditary link, it is more common to find sarcoidosis in those with other sarcoidosis-positive family members.
Who Treats Sarcoidosis?
Which doctor - and how many doctors - you see for your sarcoidosis depends on which organs are involved: pulmonologists for lung involvement, cardiologists for heart involvement, rheumatologists for musculoskeletal involvement, and so on.
While there are a few specialized sarcoidosis centers that include multiple providers within one location, if you cannot get to one of them, is it is important to find local providers who are familiar with sarcoidosis.