Many of us first heard about the disease sarcoidosis when it was revealed comedian Bernie Mac had been diagnosed with it. Since that time, we’ve learned that Tisha Campbell Martin has also been diagnosed.
In the United States, sarcoidosis is more prevalent among African-Americans, presenting 10 times more common in Blacks, and occurring two times more frequently in Black females than in Black males.
WHAT IS SARCOIDOSIS? ARE THERE DIFFERENT TYPES?
Sarcoidosis is a disease that causes your immune system to overreact, which can lead to health issues. We don’t know exactly what triggers this over-reaction, but this is a subject of intense investigation in the research labs across the country. While sarcoidosis can affect virtually any organ in the body including the skin, lymph nodes, heart, nervous system, and joints, over 90% of cases include the lungs.
HOW DOES SARCOIDOSIS AFFECT YOUR BODY? DESCRIBE THE SYMPTOMS.
If you have sarcoidosis, the increased inflammation in your body may cause flu-like symptoms such as night sweats, joint pain and fatigue. This inflammation can lead to scar tissue in your lungs while also making them function more poorly. Some people with sarcoidosis also have skin and eye damage in addition to lung disease. Occasionally, those with sarcoidosis develop granulomas and inflammation in their hearts, which can trigger abnormal heart rhythms and problems with heart muscle pumping strength.
WHAT CAUSES SARCOIDOSIS AND WHY IS IT SO HARD TO DIAGNOSE?
No one knows what exactly causes sarcoidosis, but we do know that people over the between the ages of 20 and 40 years old, and women are more likely to develop sarcoidosis.
Sarcoidosis is difficult to diagnose because of the range of ways it can show up in the body – from skin rashes to blurry vision to respiratory problems – and some patients never have overt symptoms. In addition, sarcoidosis is a rare disease – estimated to affect 200,000 Americans (i.e. < 0.1% of us) making leading to a lack of knowledge among some physicians. Lung doctors tend to have the most experience with sarcoidosis.
IS SARCOIDOSIS HEREDITARY?
The incidence rate in African-Americans is threefold to fourfold higher compared to Caucasian patients, however the disease has been characterized in all demographics regardless of age, gender or race.
IS IT ALWAYS DEADLY OR CAN ONE LIVE A FULL LIFE WITH SARCOIDOSIS?
You absolutely can live a full life with sarcoidosis. Sarcoidosis is a confusing disease in the fact that symptoms can come and go, and range in severity overtime. In most of these cases, the disease improves by itself, and up to 30% of patients with sarcoidosis have symptoms improve without treatment.
It is sometimes said that 1/3rd of patients improve without treatment, 1/3 remain unchanged even without treatment, but 1/3rd tend to have progressive disease that may need treatment. In many people with evidence of organ dysfunction treatment with anti-inflammatory medications can be very helpful.
WHAT ARE YOUR SUGGESTIONS FOR INDIVIDUALS LIVING WITH SARCOIDOSIS ON HOW BEST TO MANAGE THEIR DISEASE?
it is very important to involve your doctor in your treatment and management plan with sarcoidosis. By monitoring how your symptoms change over time, you can make sure you are getting the right treatment at the right time, and accessing the support you need.
Sarcoidosis is often treated with the help of a multidisciplinary team of healthcare professionals. Because the disease can affect so many organ systems, you may work with healthcare providers who specialize in the treatment of the lungs, heart, brain, kidneys, liver, eyes and skin.
Support can come in many forms, and include oxygen therapy for patients with advanced disease who have low oxygen levels in the blood. For such sarcoidosis patients, supplemental oxygen can be helpful to decrease your shortness of breath during everyday activities and feel less fatigued and help keep you active. Pulmonary rehabilitation programs can be helpful for those who have experienced muscular deconditioning after a period of significant exercise limitation due to illness. It is important to keep moving.
WHAT ARE THE SIGNS THAT YOU MAY HAVE SARCOIDOSIS?
Sarcoidosis is difficult to diagnose because of the range of ways it can show up in the body – from skin rashes to blurry vision to respiratory problems – and some patients never have overt symptoms. In addition, sarcoidosis is a rare disease – estimated to affect 200,000 Americans making knowledge leading to a lack of knowledge among some physicians. However, you should contact your doctor if you think you have the flu or are experiencing any of the symptoms – blurry vision, skin rashes, respiratory issues.
ARE THEY ANY SUPPORT GROUPS FOR PEOPLE WITH SARCOIDOSIS?
It’s essential to reach out to others in similar situations to talk and support one another. The American Lung Association has Better Breathers Clubs that meet once or twice a month with a respiratory therapist to learn more about their chronic lung disease and connect with others in similar situations. You can find the Club closest to you at Lung.org/better-breathers, as well as information about our online support groups should travel be a barrier for you.
Dr. Christman now answers questions from the Text Tom Club on the next page.