Help Support Sarcoidosis Awareness Month
When I was diagnosed with sarcoidosis in 2013, I had no idea what was coming. Heck, I couldn’t even pronounce my condition (and truthfully, I still mispronounce it at times). All I knew was that I had red marks on my face, and my lungs were apparently in decline.
Ah, the joys and innocence of diagnosis. (Yes, I know that sarcasm doesn’t translate well in writing. But I’m rolling my eyes at this moment.)
But seriously, this challenging and often terrible condition has helped open my eyes to what is truly possible. It has also proven time and again just how critical resources and public awareness are when you are fighting a rare disease like mine.
That is why I am so happy that April is Sarcoidosis Awareness Month!
During this month, organizations that help support patients like me, as well as our vital caregivers and medical professionals, do what they can to provide broader awareness of this disease. These supporting organizations include two I have the honor of supporting myself: the Foundation for Sarcoidosis Research, or FSR (where I was recently honored to join the Patient Advisory Board), and the American Lung Association.
I’m truly thankful for these organizations and others like them. But I am doing better than many who have sarcoidosis.
Yes, I do take a few hundred pills a year for treatment (and yes, I’ve counted; I am a certified public accountant, after all, and I count everything).
Yes, I do need a monthly infusion of Remicade (infliximab) or Inflectra (infliximab-dyyb).
Yes, I do have a few dozen medical appointments each year.
These things are all true.
But compared with many others with sarcoidosis, I have great health insurance, various pharmacy locations, a home nurse for my infusions, and access to world-class care at the Johns Hopkins Sarcoidosis Center. All of those benefits allow me to live a relatively normal life (assuming you consider home healthcare “normal”) and trying 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 about getting us the resources and privilege to still live our best life.
This is also about those fellow sarc warriors who are struggling, 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 I am asking you today for a favor. Yes, you, the person reading my words here.
Please support us during Sarcoidosis Awareness Month. Following are some great organizations that you can help, which help people like me.
I am a big supporter of the FSR, which holds numerous events year-round, not just during the awareness month. Through this organization, I have been able to attend various patient conferences where I was able to meet other sarc warriors and learn better ways to manage this condition. In fact, I was able to join the Johns Hopkins Sarcoidosis Center through people I met at an FSR conference.
I also want to note the Bernie Mac Foundation, named after the late, great comedian who had sarcoidosis. This organization provides resources to patients while supporting research. It also holds a great fundraiser each year in April that helps fund its great mission.
And SarcoidosisUK holds a Build Your Own Marathon, which admittedly holds a special place in my runner’s heart.
Of course, despite the work of these and other great organizations, I’m hoping that one day there won’t be a need for Sarcoidosis Awareness Month. I hope that all of these organizations are successful in their mission, and that they do it so well they are no longer needed (at least not for sarcoidosis).
But until then, please join me in supporting Sarcoidosis Awareness Month. Thank you.
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.
About the Author
Comments