When I was diagnosed with sarcoidosis in 2013, I had no idea what was to come. Heck, I couldn’t even pronounce my state (and honestly, I still pronounce it wrong sometimes). All I knew was that I had red marks on my face and my lungs were apparently declining.
Ah, the joys and innocence of diagnosis. (Yes, I know sarcasm doesn’t translate well in writing. But I’m rolling my eyes right now.)
But seriously, this difficult and often terrible condition has helped open my eyes to what is truly possible. It also proved time and time again how critical resources and public awareness are when you’re battling a rare disease like mine.
That’s why I’m so glad April is Sarcoidosis Awareness Month!
During this month, organizations that help support patients like me, as well as our essential caregivers and medical professionals, are doing what they can to raise awareness about this disease. Among these support organizations, there are two that I have the honor to support myself: the Sarcoidosis Research Foundationor FSR (where I recently had the honor of joining the Patient Advisory Council), and the American Lung Association.
I am truly grateful to these organizations and others like them. But I’m better than a lot of people with sarcoidosis.
Yes, I take a few hundred pills a year to medicate myself (and yes, I counted; I am an accountant, after all, and I count everything).
Yes, I need a monthly infusion of Remicade (infliximab) or Inflectra (infliximab-dyyb).
Yes, I have a few dozen medical appointments every year.
These things are all true.
But compared to many other people with sarcoidosis, I have excellent health insurance, various pharmacies, a home nurse for my infusions, and access to world-class care at Johns Hopkins Sarcoidosis Center. All of these benefits allow me to lead a relatively normal life (assuming you consider home care “normal”) and attempt to run half marathons and marathons.
So, at the risk of a bad joke, if you’re going to have sarcoidosis, my situation is about as good as it gets.
However, Sarcoidosis Awareness Month is all about giving us the resources and the privilege to live our best lives.
It is also about those fellow sarc warriors who struggle, often in silence and in the dark. They are no different from me, and their voices are just as important as mine, if not more so.
So I’m asking you a favor today. Yes, you, the person reading my words here.
Please support us during Sarcoidosis Awareness Month. Here are some great organizations you can help that help people like me.
I am a huge supporter of the FSR, which organizes many events throughout the year, not just during awareness month. Through this organization, I was able to attend various patient conferences where I was able to meet other sarc warriors and learn better ways to manage this condition. I was actually able to join the Johns Hopkins Sarcoidosis Center through people I met at an FSR conference.
I would also like to highlight the Bernie Mac Foundation, named after the late great comedian with sarcoidosis. This organization provides resources to patients while supporting research. He also hosts a big fundraiser every April that helps fund his big mission.
Of course, despite the work of these and other great organizations, I hope that one day Sarcoidosis Awareness Month will no longer be necessary. I hope all of these organizations succeed in their mission and do it so well that they are no longer needed (at least not for sarcoidosis).
But until then, please join me in supporting Sarcoidosis Awareness Month. Thank you.
To note: Sarcoidosis News is strictly a disease news and information site. It does not provide medical advice, diagnostic, or treatment. This content is not intended to be a substitute for professional medical advice, diagnostic, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and aim to spark discussion about sarcoidosis issues.