On My Diagnosis Anniversary, I’m Grateful for a Foundation That Has Given Me So Much

[Joachim]

Happy anniversary to me!

On Sept. 24, 2014, I was diagnosed with sarcoidosis. These eight years have been quite amazing, though I previously thought the date had been closer to nine years. Regardless, when I think of where my life was at that time — in Maryland, struggling to be a successful entrepreneur — versus now — in New York City, as the CEO of the oldest public accounting association in the county — it really shows how much can happen in one’s life.

As for my life with sarcoidosis, one of the most important groups I’ve been involved with is the Foundation for Sarcoidosis Research, or FSR. Admittedly, I’m a big fan!

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Getting involved

One of the highlights of this past summer was participating as a panelist in the FSR Global Virtual Patient Summit. I sat on a panel called “Life Hacks: Unveiling Your Best Life With Sarcoidosis,” along with some truly inspiring people.

Following that great event, I joined launch events related to the new FSR Global Sarcoidosis Clinic Alliance (GSCA), which describes itself as a “member program consisting of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis.” I’m truly excited about this, because I think it will help many of us living with sarcoidosis ultimately receive better care.

But beyond our care, there are opportunities for patients like me and caregivers to participate, including by becoming an FSR-GSCA Outreach Leader or an FSR-GSCA Support Group Leader at a local FSR Alliance clinic.

Volunteers will use their skills to increase awareness about sarcoidosis and Alliance member clinic services that are available, or to co-facilitate and co-host monthly sarcoidosis support groups for patients and their loved ones.

Like I said, I’m a huge fan of FSR.

Opening doors

When I was diagnosed in 2014, sarcoidosis was a big word with a lot of scary outcomes (which sometimes still applies, of course). But FSR helped turned my fears into positive actions. I attended my first FSR Patients Conference in Baltimore, just 20 minutes from where I lived at the time.

At that in-person event, I listened to doctors and health experts discuss the realities and challenges of sarcoidosis. I was even able to meet and talk with other patients, who showed a newbie like me that you can live with this disease. It may not be easy — in fact, it probably won’t be easy — but you can do it. That was a big deal for a new patient like me at the time. Sometimes the fear of this disease is almost as bad as the disease itself.

Best yet, at that conference in Baltimore, I met a doctor at the Johns Hopkins Sarcoidosis Center who talked me through how I could join their clinic. I remain part of that clinic today, and Johns Hopkins is a key part of my care plan.

All of that happened for me because of that one FSR clinic so many years ago.

I later attended an FSR Patient Conference in Toronto, in the fall of 2019, just a few months before the start of the COVID-19 pandemic. Going to that conference after years of healthcare and self-care allowed me to learn about recent updates in the field of sarcoidosis, as well as chat with sarcoidosis patients in another country, where a different health insurance system sometimes led to different care choices and outcomes. (Sometimes these differences were great, while other times they were challenging.)

I even happened to visit Toronto, albeit coincidentally, at the start of Nuit Blanche, a fantastic all-night outdoor arts festival that extended for many blocks near my hotel.

Again, all of that happened at one FSR clinic.

Most recently, as I mentioned earlier, I had the honor of giving back to FSR as a panel at their recent virtual Global Patient Conference. And now I also give back as a member of the FSR Patient Advisory Committee. Considering how much FSR has given me in my sarcoidosis journey, I feel like participating on that committee is the least I can do. Plus, there are some great people in the group.

All of this is why I’m so excited about recent FSR activities like this Global Alliance. I think it will greatly enhance communication and collaboration among some of the great healthcare providers for sarcoidosis, while giving us patients and our caregivers the opportunity to work with them even more directly. I think that will be a good thing for healthcare providers and for us patients as well.

What a great anniversary gift!

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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.

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