“As a mom living with scleroderma, it required my boys to grow up quicker than they should have.” Kori W. (dx 2022) says of three sons. “Instead of me showing up for them, there have been many more moments of them showing up for me.” Join us this Mother’s Day in celebrating moms like Kori, and the incredible strength it takes to navigate this disease while still being there for your family.
“My symptoms began in November 2021 with shortness of breath, arthritis in my shoulders and hands with significant edema in my hands overnight,” she recalls. “I also had Raynaud’s in my hands, feet and lips turning blue.” After several months, an ER visit finally led to her diagnosis: diffuse cutaneous systemic scleroderma, with lung fibrosis, an embolism, and GI involvement.
After her diagnosis, Kori had to adjust to an entirely new way of living. “At one point, I would get out of bed only to go lay on the couch in the living room. That is what my life became,” she says. “At the age of 42, I could no longer walk without the use of a walker, and later wheelchair.”
Through it all, her family has become her anchor. “This disease affects my husband and three sons in ways we couldn’t even have imagined,” she says. “I am extremely lucky to have such amazing caretakers.”
Today, Kori is a passionate voice for the scleroderma community. “With scleroderma looking different for every patient, it is so very important that further research needs to be done,” she says. “I believe this is my calling to spread the word—#SayScleroderma.”
She has also found a meaningful way to channel that passion: adding a note to her Facebook bio to donate to scleroderma research in her honor. “I hope that by donating in my honor, they gain an understanding that they are funding our way to better treatments and hope for a future cure,” she says.
It’s a reminder that a tribute gift to the SRF is a great way to honor someone you love, for Mother’s Day or any day of the year. Kori, thank you for sharing your story with us. To all the moms who stand with us in the search for a cure to scleroderma, thank you. Happy Mother’s Day! 💙
