April is Sarcoidosis Awareness Month. During this month, people with sarcoidosis, caregivers, physicians, and other supporters come together to amplify the stories of those affected, reinforce the importance of continued research and advocacy, and broaden understanding of this rare inflammatory disease.
What is Sarcoidosis?
Sarcoidosis is a rare inflammatory disease in which the immune system overreacts, though the reason for that overreaction isn’t known. Our immune system normally protects us against foreign invaders and harmful substances like bacteria or fungi by releasing chemicals to destroy the invaders, leading to inflammation. In sarcoidosis, the inflammation does not go away, leading to the formation of granulomas, or clusters of inflamed tissue. Granulomas can form anywhere in the body (in any organs) but are most often found in the lungs or lymph nodes.
In many cases, sarcoidosis is an invisible illness, which means there aren’t always outward signs. Additionally, many people don’t experience symptoms and the disease is discovered on a routine chest x-ray. For those who do experience symptoms, these may include:
- Coughing
- Wheezing
- Chest pain
- Night sweats
- Joint pain and swelling
- Shortness of breath
- Fatigue
- Swollen lymph nodes
- Depression
Over 50% of those affected enter into remission within three years of diagnosis. Sarcoidosis is rarely fatal and can be managed with treatment. People with brain, heart, or eye involvement require treatments to relieve symptoms, control inflammation, and improve organ function.
Robin’s Story
An estimated 150,000 – 200,000 people in the United States currently live with sarcoidosis, with an estimated 27,000 new diagnoses each year. According to Johns Hopkins Medicine, Robin Goble never expected to be one of these cases. For all intents and purposes, in 2019, Robin was at the peak of her health. She was a devoted cyclist and strength trainer, growing stronger ever day.
Then, suddenly, her workouts started getting more difficult. She felt out of breath whenever she went cycling. Then the shortness of breath and fatigue progressed, even happening when she was walking around. As time went on, the fatigue worsened. Then the headaches began, followed by dizziness and vertigo. By the time the double vision set in, Robin was increasingly concerned and ready to pursue help.
An MRI found that Robin’s eyes, brainstem, spine, and brain were all inflamed; doctors immediately hospitalized her, looking for answers. Five days later, Robin learned that she had neurosarcoidosis, a type of sarcoidosis that causes nervous system inflammation. She was also diagnosed with pulmonary sarcoidosis, which involves the lungs.
Although coming to terms with the diagnosis was challenging, Robin is thankful for the care she’s received from Johns Hopkins Sarcoidosis Center. She is also involved in patient advocacy to raise awareness and reinforce the importance of community. While Robin still sometimes deals with symptoms, she shares that nutrition, mindfulness, and medication have all been greatly helpful in symptom management.
