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

Calvin Harris avatar

by Calvin Harris |

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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.

***

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.

Comments

Allan Martin avatar

Allan Martin

Great column Calvin I live in Australia and my daughter has Sarcoidosis. You are absolutely right there is such a lack of information and medical support. It does make her feel that she is going it alone there is such a lack of care and understanding about this disease in this country. Thank you Allan

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Calvin Harris avatar

Calvin Harris

Hi Allan. Thanks for your kind words (as an aside, one of my favorite former bosses shared your name). Sadly, finding support seems to be tough in so many countries. All the best!!

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DebbraP avatar

DebbraP

Just when I found a Rheumatologist with Sarcoidosis experience, he moved waaay over to the other side of my city while I had to move waaay over on the opposite side. I don't have a car anymore so hope that the city's volunteer service can take me to my appointments. I wish we didn't have to worry about things like this but heck, I've been homeless these past few months and have figured out how to still live. At this point, I think now I can figure out anything. But still, we need more doctors with Sarcoidosis experience or to at least to be taught about it.

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Calvin Harris avatar

Calvin Harris

Hi DebbraP. Thanks so much for sharing, I applaud you for making it through such tough circumstances. It’s so true, we need more doctors to understand our disease. I know that I’ve had very good fortune on being able to find the right ones. All the best to you!

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Marsha avatar

Marsha

Thanks for the informative post. I, too, am a sarcoidosis warrior. Not only is my disease fibrotic, it has help left me dependent on strong narcotics and steroids. I have broken my back five times and lost most of teeth due to the heavy use of steroids. In the past five years I have been hospitalized 34 times for pneumonia and other related infections. I am now on hospice. Is there still help?

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Calvin Harris avatar

Calvin Harris

Hi Marsha. Thanks for your message. I’m so sorry to hear how challenging it’s been. I’m afraid I don’t know much about hospice options, but I’ve admitted had good experiences working with my personal doctors and Foundation for Sarcoidosis Research for support group. All the best!!

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Darlene Harmon avatar

Darlene Harmon

It definitely is a disease that requires a lot of support. i have been battling this disease to the point where it has attacked my eyes, lung, heart, neuro, skin and has left me with no mobility inability to stand or walk. I go to the Cleveland Clinic and they work very hard trying to find a cure for this rare chronic disease. On top of it I have developed inclusive body myosities which is another chronic rare disease.

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Calvin Harris avatar

Calvin Harris

Hi Darlene. Thanks for the comment. I’m glad that you’ve connected to Cleveland Clinic. Personally, I found that being connected to a comprehensive practice has made management much easier. All the Best!!

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Mhairi McDonald avatar

Mhairi McDonald

I live in Canada and I’ve got a great lung specialist but she doesn’t seem to get the other issues that I’m struggling with. My family doctor is great but I don’t know if she knows what to do with me either. I’m having a terrible time with my joints right now and don’t know what to do? I cry with pain.

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Calvin Harris avatar

Calvin Harris

Hi Mhairi. Thanks for the comments. It’s great that you found a good lung doctor, but I do understand how tough it can be when our sarc goes beyond the lungs. I’m sorry to hear your pain, and hope you’re able to find another doctor for the joint issues. All the Best!!

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Kathryn Owens avatar

Kathryn Owens

I'm looking for a support group near Elyria Ohio

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Calvin Harris avatar

Calvin Harris

Hi Kathryn. Have you tried the Foundation for Sarcoidosis Research (https://www.stopsarcoidosis.org/)? They have links to support groups there. All the best!!

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