Don’t Go It Alone: Finding Support in Life With Sarcoidosis

By the time this column is published, I will have seen my specialist at the Johns Hopkins Sarcoidosis Clinic in Baltimore, Maryland. Although I live in Brooklyn, New York, I still visit my specialist three times a year.

Admittedly, technology and mobile apps make it easy to reach my doctor between appointments (thank you, MyChart), but having regularly scheduled visits is still vital. Because all of my appointments have been virtual since the COVID-19 pandemic began, this will be my first time seeing my doctor in person in a while. Funnily enough, I am excited — or at least, as excited as one can be to see a doctor.

After so many years of visiting the clinic, I value the feedback and support I receive. In fact, despite having many excellent doctors in Maryland, my providers at the Johns Hopkins clinic were the only ones I kept seeing after I moved to New York in 2019. After all, there aren’t many clinics devoted specifically to my rare disease, and even fewer that are as world-renowned as Hopkins. Even though appointments involve hours of travel, it was an easy decision to stay.

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However, what also convinced me to stay with Hopkins was the unfortunate lack of proper sarcoidosis care I’ve seen over the years.

Sarcoidosis is an odd disease that presents differently in each person. That is why so many of my fellow sarc fighters refer to themselves as “snowflakes.” My combination of sarc-affected organs (lungs, skin, and bones) may be quite different from another patient’s. Even if the exact same organs are affected in both of us, our condition may vary in severity. This lack of consistency undoubtedly makes it tough for healthcare providers to diagnose and treat sarcoidosis, and it certainly makes it tough on us patients.

This is where we can begin to address the lack of sufficient medical support for sarcoidosis fighters.

From patient conferences sponsored by the Foundation for Sarcoidosis Research (FSR) to discussions on social media, I often hear that many sarc fighters struggle to find helpful healthcare providers.

Some can’t find a specialist in their area. Others come across doctors who don’t seem to understand or believe that it’s sarcoidosis. And still others find a specialist but can’t easily visit them due to distance, a lack of resources, or other issues.

This can be the sad reality of living with a chronic rare disease. Without a strong medical support team, sarcoidosis can be very difficult to manage.

Fortunately, my former primary care doctor in Maryland immediately referred me to the Hopkins clinic after my diagnosis. While it took over a year to be admitted, I was able to find great healthcare support until then.

My journey has been better than that of many others. I am fortunate to be able to actively participate in my care.

For those who are still searching for support, or even someone to simply believe you, I encourage you to seek out resources such as the FSR or communities on social media. This disease can be overwhelming, even for those of us who have managed it for years.

Please, don’t go it alone.

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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.