Sarcoidosis

What it is

Sarcoidosis is an inflammatory disease that can affect any organ, though most often it affects the lungs and the lymph nodes in the chest [1]. It can settle quietly, and it can leave permanent scarring, called fibrosis, in the lungs or elsewhere [1].

Why this guide is written for Black patients

Your risk of sarcoidosis is higher if you are of African or Scandinavian descent [2]. The American Academy of Dermatology states that in the United States, Black women have the highest risk of developing sarcoidosis [4].

The measured gaps are large. In United States data from 2010 to 2013, incidence was 17.8 per 100,000 among Black Americans against 8.1 among white Americans, and among Black women rates reached 71 per 100,000 per year [3]. In the ACCESS study, Black patients were more likely to have more organs involved and lower lung function as measured by FVC percent predicted, and over time were more likely to see lung function decline and new organs become involved [3].

Mortality is where the difference is widest. One analysis found an age-adjusted sarcoidosis mortality rate roughly 12 times higher for Black patients than white patients, 16 against 1.3 per million [3]. Hospitalization rates in one analysis ran nine times higher for Black patients [3].

Risk also rises with age, especially after 55, and women are more likely to have sarcoidosis than men, although men can have it too [2].

What to ask a clinician

• Which organs are involved in my case, and how did you check?
• What is my baseline lung function, and when will it be repeated?
• Have my eyes, heart and kidneys been checked, and how often should they be?
• Do I need treatment now, and if not, what would change that?
• If I am on steroids, what is the plan for coming off them, and what are we watching while I am on them?

What good care looks like

Not everyone needs treatment [1]. Treatment depends on your symptoms and which organs are affected, and medicines can help treat the inflammation or lower the body's immune response [1]. Being told to watch and wait is a real plan, but it only works if the watching is scheduled.

Good care therefore looks like a monitoring calendar rather than a prescription. Because sarcoidosis can affect any organ [1] and Black patients are more likely to develop involvement of new organs over time [3], the checks follow the organs it reaches, which in the ACCESS study included the skin, the liver, the lymph nodes and the eyes as well as the lungs [3]. Ask for the interval in writing.

Outcomes vary widely. Many people recover with few or no long-term problems, and sometimes the disease leaves permanent scarring [1]. People with sarcoidosis may feel extremely tired or have a fever, with other symptoms depending on which organ is affected [1]. Fatigue that a scan cannot see is still a symptom, and it is worth raising even when the imaging looks stable.

Skin is one of the organs involved often enough to matter, and sarcoidosis appears on the AAD's list of conditions that present differently in darker skin tones [4]. New lumps, raised patches or discoloration on the skin belong in the same conversation as the chest.

When it is urgent

Go now for chest pain, a racing or irregular heartbeat, fainting, or shortness of breath that has suddenly worsened, because sarcoidosis can involve the heart.

Go the same day for eye pain, redness, light sensitivity or blurred vision, since the eyes can be affected and delayed treatment risks sight. Also go the same day for severe headache, confusion, new weakness or numbness, or coughing up blood.

What to do next

Sarcoidosis is usually managed by a pulmonologist, sometimes with a rheumatologist, a cardiologist or an ophthalmologist depending on which organs are involved.

Find Black pulmonologists, and take a copy of every chest x-ray or CT report you have. Ask at the first appointment which organs have already been checked and which have not, and write the answer down.