EASTON, Kan. -- Imagine that your skin, tissues and organs are hardening. Julie Gould is living that nightmare. Now she's taking a radical step to try to stop the rare disease.
Gould went to Mexico with her family in January of last year. The 45-year-old nurse thought she had contracted the chickingunya virus.
"Every joint in my body ached. My jaw, I couldn't chew gum," she recalled.
But it wasn't a virus. Soon, her hands and feet swelled. Later, her fingers became frozen. So did one shoulder. That's made the simplest chores difficult. She also has cold hands and feet.
After seeing many doctors, Gould learned she has scleroderma. Her immune system is causing an overproduction of collagen which is hardening skin and tissues. Even her heart and lungs are affected.
Gould said it's frightening and depressing.
"Thinking maybe I'm gonna die within the next five years. Obviously, I have young children. I want to see them grow up," she said.
So Gould and her loved ones searched for treatment options and found she could have an experimental stem cell transplant at Northwestern Memorial Hospital in Chicago. Her own stem cells have already been removed. She's had one chemotherapy treatment. Next week, she'll have much more chemo to wipe out her bad immune system. Then she'll get her stem cells back to restart the immune system and hopefully stop scleroderma from progressing.
There are high risks including infection.
"I just have to believe and jump in with both feet and go with what the plan is," she said.
"We're just excited and waiting and we're a lot more hopeful than we were at the beginning," said her 17-year-old daughter, Peyton.
They're hopeful that taking a hard stand against scleroderma will work.
Gould's health insurance is covering the stem cell transplant. Some other patients have had difficulty getting coverage because the transplants are still considered experimental for diseases like scleroderma.