Help Tackle Sarcoidosis by Speaking Up on Rare Disease Day

We sat just a few feet apart, trying to figure each other out. He jotted down his clues, and watching him closely, I looked for mine.

Given that fewer than 200,000 Americans have sarcoidosis, which qualifies it as a rare disease in the U.S., it wasn’t a mystery he often had to solve. But sitting across from physicians and deciding if they can help is one I must solve frequently. 

Sarcoidosis can cause a wide range of symptoms, including shortness of breath, fatigue, and muscle and joint pain. Roughly 90% of us have lung involvement. But the clusters of inflammatory cells, known as granulomas, can occur anywhere in our bodies. 

Often there are no outward signs of the disease, placing many of us in the ranks of the 10% of Americans with invisible disabilities. In a society where “seeing is believing,” it’s tough to make others understand the condition’s impact, whether it’s on the job, at home, or while seeking healthcare. 

That’s where our voices come in. We have the power to inform, to educate, and to change perceptions. But only if we speak up. On Rare Disease Day this Feb. 28, let’s bring attention to sarcoidosis. 

Some 7,000 rare diseases exist in the U.S., affecting an estimated 25 to 30 million Americans, according to the National Institutes of Health. Without greater awareness, we will continue wondering  — like I did that day — whether those we seek care from understand, believe, and will help.

On average, it takes 5.6 years in the U.K. and 7.6 years in the U.S. to be correctly diagnosed with a rare disease, according to a 2013 survey. It typically takes eight physicians and up to three misdiagnoses to arrive there. 

Having symptoms others can’t see makes the path to treatment that much harder. My pulmonary sarcoidosis was identified early because of a chest X-ray. But it took several years to diagnose the resulting small fiber neuropathy, which is largely going undiagnosed within our population. 

Although pain, fatigue, and cognitive dysfunction are common complications, many physicians dismissed the relevance. Others insisted I had depression or blamed medications for the issues, which continue to stick around.

Cardiac involvement is also largely overlooked, with most cases not discovered until autopsies are performed. If not for readers, I would not have realized our population’s risk for it. 

Sarcoidosis takes our normals. But it also gives. It’s the reason why my victories, no matter the size, are sweeter. Why the little things people like my family do give me the power to keep on keeping on. And why I’ve discovered I’m stronger than I ever knew I could be. 

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

• Purple reigns: South Korea’s Banwol Island painted its town purple years ago to boost tourism, which has paid off even during the pandemic, according to Travel + Leisure. About 400 buildings, old-style telephone boxes, and a bridge are completely covered in the pastel purple hue. The government also added plants in a matching shade, including 40,000 New England asters and more than 230,000 square feet of lavender fields. 
• Get Phillies to say it: If you’re willing to spend the cash, you can get a select few Philadelphia Phillies players to create a personal video for you. Fees range from $19 to $300, and you have a choice of 26 current and former players for your video message, CBS reported. Ryan Howard, Jimmy Rollins, Larry Bowa, and Lenny Dykstra are among the offerings on Cameo, which also provides custom messages from a wide range of other celebrities and reality TV stars. 

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.