For this year’s awareness month, ‘Say Sarcoidosis’

The disease is hard to pronounce, as well as difficult to diagnose, treat

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by Mary Chapman |

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Saying “sarcoidosis” can be problematic for some, so the Foundation for Sarcoidosis Research (FSR) will focus on the condition’s pronunciation as part of this year’s National Sarcoidosis Awareness Month, which is observed each April.

Sarcoidosis is also difficult to diagnose, and therapies can only manage its symptoms. The condition is marked by chronic inflammation and granulomas, or small clusters of immune cells, that can form in nearly any tissue or organ, but occur most often in the lungs.

This year’s campaign is called “Say Sarcoidosis” and will feature the hashtags #SaySarcoidosis and #SarcoidosisAwarenessMonth.

“Too often, individuals only encounter the word ‘sarcoidosis’ when a loved one is diagnosed with the disease,” the foundation states on its campaign webpage. “While Sarcoidosis (SAR-COY-DOE-SIS) may be difficult to pronounce, living with it presents even greater challenges.”

Along with featuring several people pronouncing sarcoidosis, a Say Sarcoidosis campaign video defines the disease and highlights its symptoms and the organs it can affect. “Together, let’s shatter the silence and “Say Sarcoidosis” this April to raise awareness and shine a light on the 1.2 million people living with Sarcoidosis,” the foundation states.

“Increasing awareness about sarcoidosis is crucial to ensure timely diagnosis and appropriate management,” said Mary McGowan, FSR’s CEO, in a foundation press release. “Through the Say Sarcoidosis campaign, we aim to empower both patients and healthcare professionals to speak up about the signs and symptoms of sarcoidosis, leading to better patient outcomes and improved quality of life for those impacted by sarcoidosis.”

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Events and activities for sarcoidosis awareness

The organization is also encouraging patients and community members to share their stories to spread the word about FSR educational programming and research, including on April 13, World Sarcoidosis Day.

As part of its Say Sarcoidosis Awareness and Fundraising Challenge, which seeks to raise $75,000, members are asked to post on their platforms about why they’re participating.

For World Sarcoidosis Day and throughout April, the FSR is asking supporters to join its #PostInPurple campaign to build awareness by putting on something purple, the color that represents the disease, taking a selfie, and sharing it on social media with the tag @stopsarcoidosis and the hashtags #PostInPurple and #SaySarcoidosis!

The foundation is providing a downloadable toolkit that includes social media tips and graphics. A sample post reads: “Join me in the Say Sarcoidosis challenge to show solidarity with individuals living with sarcoidosis. Together, we can amplify our voices and bring attention to this often-overlooked disease. #SaySarcoidosis #PostinPurple.”

FSR is also offering its Sarcoidosis Advocacy and Policy Toolkit for those interested in lobbying for the sarcoidosis community.

As part of the Say Sarcoidosis campaign, the foundation is also selling purple T-shirts with the its logo through April 19. Proceeds will support FSR’s research and patient support initiatives.

The FSR has a number of events for the month. Virtual offerings include:

  • a “Say Sarcoidosis” community discussion on April 18
  • a webinar on “Using Your Voice with Clinicians and Research” on April 25
  • Memorial Monday, to honor those who’ve passed away from sarcoidosis complications, on April 29
  • Ask the Sarcoidosis Expert during the week of April 29.

In-person events include:

“We invite individuals, organizations, and communities worldwide to unite in the fight and Say Sarcoidosis,” McGowan said. “Together, we can make a difference by amplifying our voices to raise awareness, improving diagnosis and disease management, increasing funding for much needed research, and reducing barriers to help those impacted by sarcoidosis to thrive.”

Other resources will include educational information, a clinical trial finder, diagnosis and treatment guidelines, a new patient road map, and a white paper on clinical trial diversity. The organization is also calling attention to its patient registry.

Elsewhere, the Bernie Mac Foundation is presenting its 7th annual Purple Carpet fundraiser April 13 at the South Shore Cultural Center in Chicago from 5-9 p.m. CST with a per person suggested donation of $175. The foundation is named for Mac, an actor and comedian who died in 2008 from complications of sarcoidosis after being diagnosed in 1983.