Can’t Stop. Won’t Stop: Mighty Mo’s Mission for Scleroderma Awareness Month
- SFGC
- 3 days ago
- 3 min read
By Monika Hilton
Before scleroderma, I was the person wearing pink for breast cancer awareness, purple for lupus, supporting everybody else’s cause. I always believed in showing up for people. I just never imagined one day I would need people to show up for me.
Now, June means something completely different to me. Scleroderma Awareness Month is personal. This disease directly affects my life every single day. It affects my skin, my hands, my mobility, my energy, and my appearance. Everything. And one of the hardest parts is that so many people still have never heard of it. That’s why I speak up the way I do.
There isn’t enough awareness about scleroderma. Too many people are misdiagnosed or dismissed while the disease keeps progressing. I want people, especially healthcare professionals, to recognize it quicker so people can get help sooner.
I stay busy year-round. I advocate in person at Rare Disease Week in Washington, DC. I write books. I speak on podcasts and news programs. I post on social media constantly. I host events. I raise money. I comment on other advocates’ posts. I share educational content and “day in the life” moments. I talk about the hard stuff too. Mobility issues, changes to my face and hands, callus debridement, pain, and adapting to a new normal.
When Scleroderma Awareness Month comes around in June, I don’t play around.
Awareness only works if people can actually SEE us. This year, one of the things I’m most proud of is securing six official proclamations recognizing June as Scleroderma Awareness Month and June 29 as World Scleroderma Day across South Carolina, North Carolina, and Georgia.
For those who may not know, a proclamation is an official statement issued by a mayor, city council, or local government recognizing an important cause or issue. It helps bring visibility and education to communities that may not otherwise hear about scleroderma.
Honestly? I didn’t know if anyone would respond. I’m not in politics. I’m just a woman living with scleroderma who decided to ask. And they listened.
I reached out to city councils and mayors. I shared my story, my social media, my website, and my advocacy work. I gave them an “aha” moment. Once people understood the human side of this disease, they became interested. They wanted to learn more.
That’s what advocacy is really about: helping people care.
If you’re sitting there thinking, “I’m just one person, I can’t make a difference,” yes you can. You absolutely can.
Nothing prepares you for how vulnerable this disease can make you feel. People are studying your skin, your teeth, your hands, your face, all the things that changed. You have to learn to love yourself in a whole different way. I had to get comfortable in my skin no matter how tough it got. You have to adjust to your new normal without giving up on yourself.
There were times I couldn’t even hold a paintbrush. Art used to feel impossible. Now my annual art show is one of my favorite awareness activities of the entire year because it reminds me how far I’ve come.
On June 27, The Mo Experience Foundation will host our 5th Annual Art Exhibition in Fairburn, Georgia. An evening where creativity meets purpose. We call it “Painting for a Purpose” because that’s exactly what it is. This event is bigger than art. It’s healing. It’s awareness. It’s community. It’s people coming together to learn about scleroderma while supporting creativity and advocacy at the same time.
If you want to help this June, start simple.
Ask your friends and family to wear teal on June 29th, World Scleroderma Day, and post why they care. Request a proclamation from your city. Talk to your church or community group about adopting scleroderma as a cause. Share someone’s post. Start the conversation. You can also find a Walk to Cure Scleroderma event or participate in the Hometown Walk from anywhere.
Put it out there. Ask for support to get the response you want. And if you want to advocate but feel overwhelmed, let me tell you this: you do not have to know everything before you begin. Google and ChatGPT helped me figure out a lot. I just started asking questions. You can too. Change your mindset from “I can’t” to “let me try.”
When I believed I couldn’t, I didn’t.
When I believed I could, I found a way and excelled.
That’s the energy I want people to carry into June.
Not “why me?”
Why not me?
Can’t stop. Won’t stop.
Monika “Mighty Mo” Hilton is a scleroderma advocate, artist, author, fundraiser, and founder of the Mo Experience Foundation, known for using creativity and community to drive awareness and action. Through public speaking, advocacy, social media, and fundraising initiatives, she has become a bold and recognizable FORCE in the scleroderma community.
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