Efforts to Educate Mark Scleroderma Awareness Month This June

From joining a walk-a-thon to sharing videos of themselves saying the rare disease’s hard-to-pronounce name, supporters are marking Scleroderma Awareness Month, observed each June. World Scleroderma Day is June 29.

The mission is to raise awareness among the general public and to educate policymakers, public authorities, industry representatives, scientists, and health professionals about the chronic disorder.

Awareness and education are vital to improving the recognition, diagnosis, understanding, and management of scleroderma, thought to affect 2.5 million individuals globally, most of them women of childbearing age.

For its part, the Scleroderma Foundation, a U.S. nonprofit, is inviting patients and caregivers to help raise awareness by sharing their stories with the organization, which will post them on its website and social media channels.

The nonprofit has listed a host of other ways people can show their support throughout the month, including joining a local Stepping Out to Cure Scleroderma walk-a-thon, becoming a member of the foundation, sending a scleroderma information packet to family and friends, and contacting their local newspaper about a possible story.

Everyone is encouraged to wear teal, the official color for scleroderma.

Other ideas include tweeting about Awareness Month and using the hashtags #hardword and #scleroaware17, and texting friends with the website of the Scleroderma Foundation. Joining the University of Texas Scleroderma Family Registry and DNA Repository, or checking in on a fellow patient also are being encouraged as great things to do.

Elsewhere, the Scleroderma Research Foundation has opened a month-long social media campaign called #SayScleroderma that will feature community members’ stories and ways participants can make a difference by using their voice and influence.

Already, there’s a quote from a patient named Liz, who was diagnosed in 1998: “Scleroderma has changed my life for the better and the worse simultaneously.”

Another patient, Jamie, who got word of her condition in 2017, wrote: “I do not want future generations to have this bombshell diagnosis dropped on them … and have no clue what that means for them.”

Ile, who was diagnosed in 2019, states that, “To me, the word ‘scleroderma’ means fight like hell. And meaning, Latin or otherwise, just doesn’t matter.”

As part of the campaign, the organization is encouraging patients and supporters to post a video of themselves saying the disease’s name, which can be hard to pronounce. This nonprofit also is asking its supporters to discuss scleroderma with someone in their lives, or share one of the foundation’s #SayScleroderma posts. Advocates are reminded to please tag the organization in their posts.

“Why #SayScleroderma? Because not enough people know what scleroderma is or does,” the organization states. “Because lack of awareness causes delays in treatments and diagnoses.”

What’s more, the organization is providing a downloadable social media toolkit that includes suggestions about raising awareness digitally.

For World Scleroderma Day, the nonprofit organization Scleroderma & Raynaud’s UK, in partnership with the Federation of European Scleroderma Associations, is providing a downloadable poster that can be shared on social media. It also is offering a video animation about scleroderma diagnosis that can be shared.

The theme of this year’s global Awareness Day campaign underscores that patients are much more than the disease.

“Their slogan ‘I AM MY PASSION NOT MY DISEASE! Scleroderma and COVID-19 will not take my smile!’ demonstrates that whilst it is vital that we increase knowledge about the condition, it is also important that we treat and understand the person, not just the disease,” the organization states on its website.