Why #SayScleroderma?
#SayScleroderma because not enough people know what scleroderma is or does.
#SayScleroderma because lack of awareness causes delays in scleroderma treatments and diagnoses.
This is why we launched #SayScleroderma for Scleroderma Awareness Month. Throughout the month of June, we share from community members using the #SayScleroderma hashtag on our social media, educational content about scleroderma and current research, and various ways you can make a difference by using your voice and influence. Even when Scleroderma Awareness Month ends, spreading awareness doesn’t need to stop. Let’s continue to #SayScleroderma, until we one day find a cure.
SCLERODERMA AWARENESS MONTH, JUNE 2024
Meet The People
People who live with scleroderma share their experiences.
Chip
Diagnosed in 1991
“I truly believe I am still here to help others in any way possible with this awful disease.”
Kate
Diagnosed in 2016
“Most people assume because I suffer from this disease, I’m fragile. I’m not.”
Farah
Diagnosed in 2006
“I aim to inspire people living with the condition to share their strengths and live their life to the fullest.”
Liz
Diagnosed in 1998
“Scleroderma has changed my life for the better and the worse simultaneously.”
Jamie
Diagnosed in 2015
“I do not want future generations to have this bombshell diagnosis dropped on them: “You have Scleroderma” and have no clue what that means for them.”
Sophie Anne
Diagnosed in 2019
“I am still young and I really want a cure to be found.”
Michael
Diagnosed in 2019
“People just aren’t aware of scleroderma. That’s why I’m very willing to tell my story.”
Ile
Diagnosed in 2019
“To me the word scleroderma means fight like hell. Any meaning, latin or otherwise, just doesn’t matter.”
Spread Scleroderma Awareness with #SayScleroderma
Post a video of you saying the word “scleroderma” and what it means to you on social media, talk to someone in your life about this disease, or share one of our #SayScleroderma posts. Tag us (@srfcure on Facebook, Instagram, Twitter, and Scleroderma Research Foundation on LinkedIn) so that we can amplify your voice if possible! Or, send us an email at info@srfcure.org and let us know how you’ve made an impact. You can also give us a call at 800.441.CURE (2873).
Help Find a Cure for Scleroderma
Take making a difference to the next level by supporting the most promising scleroderma research.
LIVING WITH SCLERODERMA
Watch the 2023 SRF Patient Forum
“Collaborating For a Cure,” an online patient forum for people living with scleroderma and those who care about them, is now available to watch online.
