Sarcoidosis: Know Your Risk

Karla Robinson, MD

 

Sarcoidosis is an inflammatory disease affecting multiple organ systems in the body.   Often times undiagnosed or misdiagnosed, the cause of this potentially life-threatening disease is still unknown.  Once regarded as rare, it is now believed that there are many people living with sarcoidosis without ever knowing it.  It is a disease in which the African American community is at highest risk with an estimated 40 in 100,000 Blacks affected in this country.

 

Since sarcoidosis can affect multiple organs in the body, its symptoms can manifest in a variety of ways.  They are often times vague, but can include cough, shortness of breath, chest pain, general fatigue, achiness, lymph node swelling (lymphadenopathy), skin and eye lesions, muscle weakness and arthritis, kidney disease, heart disease, neurologic, gastrointestinal, and reproductive changes.

 

The Diagnosis

Diagnosing sarcoidosis can be difficult, with it being most often diagnosed in young patients between the ages of 20-40 years old.  Although it can affect virtually every organ system in the body, over 90% of people with sarcoidosis have some form of lung involvement.  Sarcoidosis patients often complain of developing a new cough, shortness of breath, and chest pain.  A chest x-ray would then be performed revealing abnormal changes consistent with sarcoidosis.  These findings prompt further testing leading to an official diagnosis of sarcoidosis.  In approximately 50% of cases, sarcoidosis is detected by accident with abnormal changes found on a routine chest x-ray prior to developing any symptoms of the disease.

 

The Course

The severity of sarcoidosis varies from person-to-person with some experiencing virtually no symptoms, and others having a much more difficult course.  It is estimated that 5% of sarcoidosis patients die as a result of their disease.  However, the actual rate of death from complications of the disease or from its treatment is presumably much higher.   Inflammatory changes in the lungs from chronic sarcoidosis can cause them to be stiff and hardened, leaving the patient unable to exchange oxygen very well.  Inflammatory changes in the heart can lead to heart rhythm problems and the inability of the heart muscle to pump efficiently and effectively.   Approximately 15% of sarcoidosis patients can develop neurological damage leading to nerve problems, weakness, seizures, and mood or behavioral changes.  A common manifestation of sarcoidosis in the kidneys is the development of kidney stones, and chronic inflammation leading to abnormal kidney function.   1 out of every 5 people with sarcoidosis can have changes involving the eyes.  It can lead to blindness if left untreated as the inflammatory changes cause damage to the structures of the eye.

 

The Treatment

The majority of those diagnosed with sarcoidosis go on to a state of remission with resolution of the inflammation without permanent debilitating effects.  However, for more than 25% of sarcoidosis patients, the inflammatory changes throughout the body are progressive, and chronic treatment is necessary.   The most common form of treatment for sarcoidosis is steroid therapy to decrease the widespread inflammation caused by the disease.  Steroid therapy is not without consequence however, with adverse effects including weight gain, heart disease, high cholesterol, diabetes, intestinal bleeding, ulcers, osteoporosis, muscle weakness, and an increased risk of infection.  Other more experimental treatments with drugs that suppress the immune system are also used in those unable to tolerate steroid therapy, or in those who don’t respond to it.  These medicines also have serious side effects, often times leaving the patient weak and prone to infections.

 

The Research

Despite ongoing research, there is still so much more to learn about this disease.  Streamlined methods of early detection and innovative treatments that are easier to tolerate are still needed to ease the burden of those suffering with sarcoidosis.   If you or a loved one happens to be dealing with a sarcoidosis diagnosis, know that you are not alone.  There are several nationwide organizations, support groups, and foundations dedicated to the cause of increasing the awareness of sarcoidosis in the Black community.   If you need more information visit the Foundation for Sarcoidosis Research online at www.stopsarcoidosis.org.