Sarcoidosis results in affected people developing lumps on their skin or in other parts of the body
| Photo Credit: By Nowack et al. – Nowack et al. BMC Dermatology 2002 2:15 doi:10.1186/1471-5945-2-15 http://www.biomedcentral.com/1471-5945/2/15, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=97978332
Sarcoidosis is an inflammatory condition that can affect several organs. A disease of unknown etiology or chronic inflammation can lead to permanent scarring of the affected tissues. Considered a rare disease, research is ongoing to understand further the causes, diagnosis and treatment modalities.
What is sarcoidosis?
Sarcoidosis is believed to be an exaggerated response of the immune system either due to a genetic disposition or due to environmental triggers. It results in affected people developing lumps on their skin or in other parts of the body. The Mayo Clinic website describes the lumps or clusters of immunity cells in an organ as “tiny collections of immune system cells in any part of the body,” which are red, swollen lumps called granulomas. They commonly occur in lungs and the lymph nodes of the chest, the website adds.
What are the symptoms?
Persons with sarcoidosis may suffer from a variety of symptoms including fatigue, shortness of breath, wheezing, chronic cough, skin rashes that appear scaly, red eyes, irregular heart beat, weakness or numbness of a limb or part of face, discolouration of the nose, cheek, lips or ears; and chest pain.
Some people may remain symptom free as the disease disappears on its own but in some others, though the disease may not progress they may have symptoms that affect their lifestyle. A third of those diagnosed with the condition may require long-term treatment. A person in whom the disease has been active for over two to five years is termed to have a chronic ailment. In such persons, it can be life-threatening.
How rare is the condition?
In the United States of America an estimated 1.5 to 2 lakh persons live with sarcoidosis. The National Library of Medicine, operated by the United States government, states that the incidence of sarcoidosis is 11 in 1 lakh among the white population and 34 in 1 lakh among the African American population.
Across the world an estimated 1.2 million have the condition. In a letter published in 2019 in the Sarcoidosis, Vasculitis and Diffuse Lung Diseases journal, researchers from the All India Institute of Medical Sciences, New Delhi, stated that while the reported prevalence of sarcoidosis in India was estimated to be 10-12 cases per 1,000 new registrations in a respiratory unit at Kolkata and 61.2/100,000 new cases at a centre in New Delhi, “these figures are unlikely to be a true representation as sarcoidosis is usually unidentified due to the high burden of tuberculosis here. Real figures are anticipated to be much higher.” At AIIMS, Delhi, approximately 100 new cases of pulmonary sarcoidosis are being diagnosed every year, says Rashi Jain, of the department of pulmonary medicine and sleep disorders at AIIMS, Delhi and the main author of the letter. “The number is quite noticeable for a disease otherwise considered rare,” the letter noted.
Organisations working to raise awareness about the disease say approximately five to 10% of all those diagnosed will have advanced sarcoidosis.
What are the treatment modalities?
Research studies and patient advocate organisations have all called for more research on sarcoidosis to develop effective treatment strategies.
Dr. Jain says low awareness about sarcoidosis in India results in doctors misdiagnosing it as tuberculosis. Stating that the condition could cause mental stress due to the multiple evaluations and tests required, she called for exclusive clinics with a multidisciplinary teams of healthcare workers from various specialties, to treat patients with sarcoidosis.
Among the affected, around 25% to 30% develop extrapulmonary sarcoid. While in men the heart function is commonly affected, in women, the skin and eyes are more prominently affected.
Many persons with the disease recover completely. In those with advanced sarcoidosis (active disease for over two to five years), treatment options include corticosteroids besides other therapies. Persons who require treatment even if they do not have symptoms are also classified as having advanced sarcoidosis. Persons on advanced treatment also need to contend with fatigue, pain, cognitive failure, neuropathy, an inability to exercise and depression besides other comorbidities such as diabetes and high blood pressure.
(R. Sujatha is an independent journalist based in Chennai. sujatha.raghunath@gmail.com)
Published – July 24, 2025 07:20 pm IST