“I practice gratitude daily. Because I lived through months of limited mobility and real fear, I do not take ordinary moments for granted,” says Monique H. (dx 2018).
June is Scleroderma Awareness Month, and stories like Monique’s are at the heart of why awareness matters.
“It started with swelling,” she recalls. “I would wake up with my eyes practically swollen shut, followed by shortness of breath, extreme fatigue, and sensitivity to the sun.” For eight months, Monique navigated tests and appointments without receiving clear answers. Finally, it was her dermatologist who finally named what she was facing: scleroderma and dermatomyositis.
“Scleroderma taught me to listen to my body in a way I never had before,” Monique says. “I learned that I am stronger than I ever imagined, in the lived, tested sense.”
In the years since her diagnosis, she has built a new chapter, launching Let’s Travel Mo, a bespoke travel agency. “Travel has become one of the most meaningful parts of my healing journey,” she says. “There was a time when I was not sure my body would allow me to do much of anything. Now I move intentionally and with deep gratitude.”
These days, Monique is a deep believer in the power of research. “There is still so much mystery surrounding scleroderma, which is exactly why research matters,” she says.
“I always agreed to photos, because there is a significant shortage of clinical research and medical imagery representing scleroderma in patients with darker skin tones, and that gap has real consequences for how quickly and accurately patients like me are diagnosed,” she explains.
We are deeply grateful to Monique for her openness in sharing her journey and for joining us to #SayScleroderma.
This month, the Scleroderma Research Foundation, the Scleroderma Foundation of California, the Scleroderma Foundation of Greater Chicago, and Scleroderma Outreach Northwest are uniting forces–because when more voices join us to #SayScleroderma, we can get louder and reach farther than ever before.
