Allison Walker (62) from Michigan, USA has been managing sarcoidosis for the past 28 years. Initially, skin lesions began to appear between her knees and ankles. “After a struggle for the first two years, the skin lesions were identified as sarcoidosis lupus pernio (a type of sarcoidosis that affects the skin),” she told Happiest Health.
The lesions started spreading across her brain, eyes, face, and lymph nodes. “In the beginning, I had symptoms of pink eye and even after multiple trips to emergency rooms I had no answers,” adds Walker. Her eyes appeared red and swollen, and even touching them led to pain. In addition, she experienced sensitivity to light, decreased vision, and floaters.
While working as a sergeant with the Detroit police department, she developed uveitis (inflammation of the middle layer of the eyes) and Heerfordt syndrome (a version of sarcoidosis that affects the salivary gland, a nerve in the face, and the eyes).
Walker’s ophthalmologist explained that vision loss would continue if she did not start treatment immediately. Her symptoms were so severe that the doctor prescribed steroid eye drops.
Dysfunction of immune cells
Sarcoidosis is a condition that occurs when a cluster of immune cells form lumps, called granulomas in various organs like the lungs, lymph nodes (a part of the immune system), eyes, and nervous system. Eventually, these lumps become red and inflamed.
“The inflammation may be triggered by chemicals and viral or bacterial infections,” explains Dr Sarika Sethia, ophthalmologist and founder of Indovision eye hospital, Pune, Maharashtra.
Sarcoidosis and the eyes
According to the American Academy of Ophthalmology, the chances of eye inflammation due to sarcoidosis ranges from 12 to 76 per cent. In 30 to 40 per cent of cases, the symptoms of sarcoidosis begin with the eyes.
When there is a granuloma formation in the eyes, it is referred to as ocular sarcoidosis. The lumps can accumulate in any portion of the eye including the eyelids, retina, lens, tear glands, muscles, nerves, and blood vessels.
Dr Shweta Jain, ophthalmologist from Eye Mantra hospital, New Delhi, says, “The most common conditions associated with ocular sarcoidosis are uveitis and conjunctival nodules (formation of nodules in the white portion covering the eyes and inner lining of eyelids).”
Progression of sarcoidosis
“Symptoms can vary depending on the location of the granulomas but often include vision problems, sensitivity to light, redness, swelling, and irritation of the eyes,” says Dr Jain. “Depending on the severity, the symptoms can range from eye pain and floaters to vision loss,” adds Dr Sethia.
A 2022 study published by the Japanese Journal of Ophthalmology shows that severe and prolonged inflammation in the eyes due to sarcoidosis can eventually lead to cataracts and glaucoma (a condition that damages the nerve responsible for the vision and causes blurring).
Complex diagnostic approaches
Chest X-rays and CT (computed tomography) scans are taken to identify the presence of granulomas in the lungs. Since tuberculosis also has similar granuloma formation, two to three diagnostic procedures are necessary to evaluate sarcoidosis.
Dr Sethia says that sarcoidosis is one of several conditions that simultaneously involve multiple organs. So, an accurate diagnosis with tissue biopsy is necessary to identify the condition. A small portion of the affected tissue is removed and examined under the microscope for the presence of inflammatory cells.
Detecting eye nodules
The ophthalmologist tests for glaucoma and cataract which are complications that can arise due to the condition; evaluates the pressure inside the eyes, clarity of vision, and presence of nodules; and uses a microscope to inspect each portion of the eyes for inflammation.
Fundus photography is a procedure in which the colour images of the internal structures of the eye are captured using a camera attached to the microscope. It helps to identify tiny nodules, retinal damage, and inflammation of blood vessels and nerves in the eyes.
When there is granuloma formation in the tear glands, their function (of keeping the eyes moist) may get affected, which makes the eyes dry. An ophthalmologist uses the Schirmer test to identify if the tear glands are functioning efficiently.
The primary aim of the management of ocular sarcoidosis is to restore vision. The ophthalmologist may prescribe eye drops to reduce inflammation and to maintain the lubrication of the eyes.
Dr Jain says, “Treatment typically includes medications like steroids along with lifestyle changes such as wearing sunglasses and taking breaks from looking at screens.” The steroids act by lowering the immune response thereby reducing inflammation.
She adds that the condition may flare up if the steroidal therapy is discontinued and surgery may be required for severe conditions.
“I am just coming out of a major flare in my left eye. My eyes have never been inactive from sarcoidosis for more than a year at a time,” says Walker. Her condition is being managed with steroid injections and regular eye examinations. The prolonged use of steroids had led to cataracts in her eyes for which she underwent surgery.
“My sarcoidosis journey has been very difficult and challenging over these years,” Walker explains. She is currently being treated with a host of medications for sarcoidosis symptoms. She also provides support to others with the same condition through a sarcoidosis foundation.