Sharing every unique story this Scleroderma Awareness Month

US nonprofit's theme for 2024 campaign is 'Every Journey Matters'

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Dozens of awareness ribbons are shown blasting out of a megaphone cone.

June is awareness month for scleroderma, and this year’s theme chosen by the National Scleroderma Foundation is “Every Journey Matters,” to recognize the unique ways in which each person in the community experiences the disease.

To encourage people to stay engaged in the lead-up to World Scleroderma Day on June 29, the National Scleroderma Foundation has put together a list of awareness-raising activities — from lighting up a building in teal blue and joining webinars and outdoor walks to spreading the word on social media.

Scleroderma is a disease of the connective tissue that holds all other tissues in the body together. Not every person experiences the disease in the same way, and symptoms can range from mild to serious depending on which parts of the body are affected, and how severely.

“We know that every person’s experience with scleroderma is unique. That’s why this year, we’re embracing the theme: Every Journey Matters,” the National Scleroderma Foundation states on its awareness month webpage.

“This June we want to share your stories with the entire scleroderma community and the world,” the webpage states.

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In keeping with the theme, all those who have been diagnosed with scleroderma or are caring for someone with the disease are encouraged to tell their story and share it on social media channels using #EveryJourneyMatters. Videos should be vertical, well-lit, and no longer than one minute.

Participants should share their first name, location, and how long they’ve been living with scleroderma. Importantly, those creating videos are encouraged to talk about their individual journies, give advice, and share what they wish other people knew about the disease, what keeps them motivated, and any support they’ve received.

Every Thursday in June, the #TealTalk series will bring the community together for live Zoom conversations with special guests. On June 6, there’s a discussion with young adults about working, dating, and parenting with scleroderma.

There will be two sessions focused on research and treatment approaches. One, about stem cell transplants, is set for June 13. The other, on June 20, will feature Carol Feghali-Bostwick, PhD, and Kathryn Torok, MD. Finally, on June 27, Janet Poole, PhD, will discuss self-care strategies with Meghan Thomas, a young adult living with scleroderma.

Besides taking part in the many “Stepping Out to Cure Scleroderma” walks being held across the U.S. — more than 35 in total this year, according to the foundation — people also are encouraged to turn teal blue lights up and request a proclamation from their local government to recognize June as Awareness Month for the disease.

To bring attention to the initiative, there’s also a social media profile picture frame, and signs, stickers, bottles, bandanas, and wristbands available to order from the National Scleroderma Foundation online shop.

For its part, the Scleroderma Research Foundation is marking this year’s awareness month with a #SayScleroderma campaign. During the month of June, the foundation will share educational content about scleroderma and current research, as well as stories from community members using the hashtag.

In the Great Britian, Scleroderma and Raynaud’s UK is launching a campaign called #TheSRUKWalk to raise funds and start conversations around scleroderma. People are invited to walk 19 miles — or choose their own distance, in the alternate — for the 19,000 people living with scleroderma in the U.K.