Living with Scleroderma

Liz’s Story

By June 4, 2021July 12th, 2021No Comments

For this first story of Scleroderma Awareness Month, meet Liz, who has lived with scleroderma since 1998. This summer marks an important landmark for her: 18 years post heart and double-lung transplant! After being initially rejected in the year 2000 because she had scleroderma, she received the transplants in 2003. Liz has spent more than 20 years managing this disease and she’s got a lot of perspective on living with scleroderma.

“My first symptom was Raynaud’s during my pregnancy,” she says. Two years later, she was diagnosed with scleroderma. She’s faced additional complications like severe Pulmonary Hypertension, and these difficulties have pushed her personally. “I have built enough resilience over my lifetime to power a small city,” she says, laughing. “Perhaps that is one of the reasons I have come as far as I have.”

“Scleroderma has changed my life for the better and worse simultaneously,” she says. “It made me give up my career for many many years, it was catastrophic to my personal health, my family, my marriage, and our household financially.” But she’s aware of what she’s gained while enduring this illness. While she wishes being a stay-at-home mom could have been more normal, she says that scleroderma “gave me the beautiful opportunity to be with my girls and I would never trade that for one second.”

To Liz, the word scleroderma means “challenges.” Our goal at the Scleroderma Research Foundation is to ease the challenges of living with scleroderma by funding and facilitating the most promising research aimed at improved therapies, and ultimately, finding a cure. You can be a part of that effort by helping to raise awareness.  Join us; #SayScleroderma, to make a difference in the lives of people living with scleroderma.