Living with Scleroderma

How Patty Learned the Word “Scleroderma”

By October 27, 2021No Comments
Patty's Story

“I learned the word scleroderma at the age of 18 when a rheumatologist explained why my hands were puffy and itchy,” Patty says. “I saw so many doctors during the beginning of the diagnosis.” Nearly 24 years later, she shares how she “can hardly remember what ‘normal’ me felt like before scleroderma.“

Living with scleroderma has presented Patty with challenges and frustrations, like the loss of independence. “I need help to do many of the basic things many people take for granted,” she says, “such as zipping up a sweater, tying your shoelaces, opening a door, or even picking up something off the floor.”

These days, she finds strength through advocacy. Living with scleroderma “doesn’t come easy.” This is why she says it’s “important to see that I wasn’t alone and there are many fellow warriors that need to know they aren’t alone.” 

She also recognizes the importance of research. “Like other diseases, it affects an entire family, not only the person diagnosed,” Patty says. “Research would make a positive impact on so many more people, beyond the people living with scleroderma.”