Sarcoidosis Month Is for More Than Just Awareness

[Joachim]

It feels like something is missing for me this month. For the past two years, really.

Before 2020, my Aprils were full of events, get-togethers, support, and connection with my sarcoidosis family. Now, we’re all in our own homes, saying again how much we miss each other as we get daily photo reminders of how much fun we had back then. This disease is awful, but our sarcoidosis family makes it possible to endure.

I was diagnosed with sarcoidosis in late 2015 after an eight-year search for answers. I was relieved to have an actual diagnosis, but I’d never heard of it before. I looked it up as soon as I got home, and the first thing I saw was that comedian Bernie Mac died from sarcoidosis in 2008. Great.

With a more thorough search later on, I tried to absorb all I could, and I haven’t stopped learning since. I learned that inflammatory cells form clusters called granulomas, which can affect just about any part of the body. I learned that it’s called a “snowflake disease” because no two people have it exactly the same.

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Mostly, I learned how much “they” don’t know. They don’t know what causes it. They don’t know why some get a mild case while others become severely disabled. They don’t know why it affects some demographics more than others (in the U.S., it’s predominantly African American women). They don’t know what causes it to develop in different organs in different people. They don’t know a cure and know very little about treatments.

I joined a few sarcoidosis Facebook groups, where I started to find what I really needed. There were people who understood what I was going through. Even if our affected areas were different, we had a shared experience in the search and the struggle. There was an instant bond with people I’d never met, and likely never would.

But then I did.

I found a local group that was hosting a walkathon during Sarcoidosis Awareness Month, celebrated every April. It was about two hours from me, but would be worth the trip if I could actually see and hug my new sarc family. I was hooked, and I wanted more. So I began to create it.

Kerry shares sarcoidosis information for the audience at “The View” talk show in 2017. (Courtesy of Kerry Wong)

Over the next few years, I organized group trips to live tapings of “The View,” the ABC talk show. When you see 20 people together all dressed in purple, you wonder why, and we had the opportunity to talk to the audience about sarcoidosis. A few people approached us afterward, including one who had just been diagnosed and was looking for answers.

I created an awareness fundraiser called “Walk ‘n’ Roll” (named to be fully inclusive of scooter and wheelchair users) and had a chance to meet even more sarcoidosis warriors. One told me he’d been living with the disease for 40 years, but had never met anyone else with it. I could only imagine how lonely that must have been, and we both cried and hugged now that we could.

Kerry speaks to the crowd at her first Sarcoidosis Walk ‘n’ Roll in 2018. (Courtesy of Kerry Wong)

I had so many things in the works for Sarcoidosis Awareness Month 2020: I was moving my Walk ‘n’ Roll to a better location; I was working on a second television show; I was even planning a Sarcoidosis Awareness Day at Yankee Stadium.

And then COVID-19 happened, and everything just … stopped.

But even while we’ve been locked away, isolated from friends, family, and the real world, the need for raising awareness is still there. It’s the only way we’ll get support and understanding, the only way we’ll get funding to research some of those things they still don’t know. And it’s the only way we’ll find one another, to know and feel that we are not alone in this.

So how can we honor Sarcoidosis Awareness Month without getting together? I’m so glad you asked! Following are just a few ways we’re still getting the word out there:

• The Foundation for Sarcoidosis Research has created the #MakeItVisible campaign, inviting us to post photos and quotes with the hashtag.
• Caring Hands Sarcoidosis Foundation highlights the Beautiful Faces of Sarcoidosis campaign on social media, including the Fallen Snowflakes (those we’ve lost).
• Karen Duffy Lambros has written books about her life with neurosarcoidosis (her latest, “Wise Up,” comes out next week!).
• Calvin Harris, Charlton Harris, and I have our columns here on Sarcoidosis News.
• Andrena Senola raises awareness through film, with a short (“Surviving Sarcoidosis”) released in 2019 and a full-length documentary (“Project Purple: Mission Sarcoidosis Awareness”) premiering later this month.
• I host a monthly Twitter chat (#SarcChat), connecting sarcoidosis warriors around the world.

Ultimately, the important thing is to do something. Whether that’s a simple retweet or doing a Ted Talk, every bit helps. Sharing truly is caring, and every click has power. So thanks for clicking the link that brought you here. I’m glad we’re doing this together.

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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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