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Sarcoidosis: A Snowflake Disease With an Avalanche of Consequences


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banner image for "Float Like a Buttahfly," a column by Kerry Wong, depicting a butterfly winding through the sky

When it rains, it pours … but when it snows, it’s sarcoidosis.

Sarcoidosis is often referred to as a snowflake disease because no two cases are exactly alike. Symptoms can begin at any age and affect any area of the body. It is often a chronic condition, but some sarcoidosis warriors are able to achieve remission.

It affects each of us at varying levels of severity, from day to day or even hour to hour. Some people are asymptomatic and unaware that they have sarcoidosis, while others, like me, become disabled. Sadly, complications from sarcoidosis can be fatal, as was the case with my fellow patient, advocate, friend, and inspiration, Rodney Reese, who passed away in September 2021.

Unfortunately, sarcoidosis can have a snowball effect, looming ever larger in both the body and the mind.

The dance of treatment, side effects, and comorbidity

It starts with a symptom or two, and during the search for answers — which can last years — frustration and fear pile on. With the grief and relief of diagnosis, we may begin treatment, but that often brings distressing side effects.

Because of this inflammatory disease and its treatments, many of us become immunocompromised, leaving us at greater risk for infections, viruses, and more. Sarcoidosis is often joined by comorbid conditions, which lead us back through the cycle with new symptoms, treatments, and side effects.

As we build our stockpile of treatments, it can feel like we’re in a snowball fight with our bodies, volleying back and forth between taking hits and throwing everything we can at our symptoms and their underlying cause.

Sarcoidosis took its first shot at me over a decade ago, and I have since hit back with steroids, anti-malarial drugs like hydroxychloroquine, and low-dose chemotherapy drugs like methotrexate. I was recently struck with a surprise snowball when I fell and broke my foot while on vacation.

As if the fracture weren’t enough, I had to miss my weekly intravenous immunoglobulin (IVIG) infusions, because my neurologist was concerned about the increased risk of thromboembolic events (blood clots). Going a month without my infusions, I felt a noticeable increase in neuropathy symptoms.

Another setback

I was able to get back in the fight when my primary doctor prescribed a blood thinner to counter the risk of blood clots. But after one infusion, I learned that my mom had tested positive for COVID-19, just two days after we were together for Hanukkah. I had to isolate for 10 days, which meant missing my infusions again, which led to more neuropathic pain — in addition to my still broken foot.

Before I could even get up, the hits just kept on coming: My husband tested positive for COVID-19, too, and although we tried to keep our distance after that, it was too late. After avoiding most people and places for nearly three years, I was sick with COVID-19. Now I had a broken foot, increased nerve pain, and COVID-19, all at once.

It was very strange to have COVID-19 along with sarcoidosis. Many of the symptoms overlap, so at times I wasn’t sure if it was COVID-19 or just a bad sarcoidosis flare. On a good day, I can easily become short of breath, and I’ve had a stuffy nose due to chronic sinusitis and rhinitis for over 15 years. I’ve had a scary-sounding cough since I was a child, and I live with fatigue, sweats, chills, and a variety of aches and pains throughout my body, all the time. But when I felt the cough reverberate through my chest, I just knew.

I was somewhat prepared for this battle, though. I was fully vaccinated and boosted, and had a few at-home tests in my closet. Together with the antiviral treatment Paxlovid that my doctor ordered right away, I was able to melt these newest snowballs thrown at me.

I am so grateful for these scientific advances, as I know that the virus would have been much worse without them. After about a week and a half, my COVID-19 symptoms finally eased, and I am excited to say that I am finally back at the infusion center as I type this.

But just as mounds of snow can remain long after it has stopped falling, COVID-19 symptoms can linger after a negative test.

As I continue working my way through messy piles of snow, I’m still struggling with a broken foot. And I still have sarcoidosis fatigue. And autonomic nervous system dysfunction. And severe arthritis. And … the list goes on. With all those ands, it’s hard for me to say that I feel “better,” but I’m grateful to say that it’s not as bad as it was.

Just like snowflakes, each sarcoidosis warrior is unique and beautiful in their own way. And though we may be fragile on our own, when we join together for support, education, and advocacy, we can be a powerful force.

“Even the strongest blizzards start with a single snowflake.” — Sara Raasch

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.

The post Sarcoidosis: A Snowflake Disease With an Avalanche of Consequences appeared first on Sarcoidosis News.

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