AB❄️UT SARC❄️ID❄️SIS

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.

200,000

Cases in the US,
qualifying it as a rare disease

90%

Patients with lung involvement

5-10%

Patients with advanced sarcoidosis
(Per FSR)

2

Medications FDA approved to treat sarcoidosis

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.

Read information about Sarcoidosis from National Institutes of Health

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.

Read more about how Sarcoidosis progresses from Cleveland Clinic

Diagnosis

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.

Read about how Sarcoidosis is diagnosed from Mayo Clinic

Treatment

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.

Read the Comprehensive Treatment Guide from Foundation for Sarcoidosis Research

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.

Read more from this Sarcoidosis In America Study

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.

Read more about Sarcoidosis Centers of Excellence from World Association for Sarcoidosis and Other Granulomatous Disorders (WASOG) 


S
tronger
Than
Sarcoidosis

❄UR MISSI❄N

Our mission is to raise awareness, advocate, and educate about this rare disease called sarcoidosis. We aim to strengthen the sarcoidosis community with information, support, connection, and interactive events that focus on the physical, mental, and emotional aspects of living with this disease.
Stronger Than Sarcoidosis was created by sarcoidosis patients, for sarcoidosis patients, and we will always be patient-centered. We aim to support the sarcoidosis community, ensuring that all sarcoidosis patients know they are not alone. Together, we are Stronger Than Sarcoidosis.

© 2021 Stronger Than Sarcoidosis