Rare disease turns woman's internal organs into stone; finds hope in new procedurePosted: Updated:
SCOTTSDALE, Ariz. -- Yvonne Johnson takes 25 pills a day just to stay alive.
The 45-year-old mother of two and former nurse looks perfectly healthy on the outside, but inside she is battling a disease that is hardening her internal organs, turning her to stone.
“The disease is hardening my heart, my lungs," she said. "When I walk, I feel like I’m walking on stones. Walking up the stairs, I can’t breathe."
In 2008, Johnson was diagnosed with a rare disease, Systemic Sclerosis. It is a disease that has no cure and she was given just five to 10 years to live.
“It is a connective tissue disease. The cartilage that is in our joints, in our skin and ligaments is hardening. My body is attacking itself,” she said.
Johnson has a form of the disease that is attacking her lungs and heart and that until recently has been fatal.
“I had kids at home. I didn’t know if I would be here for them,” she said.
Doctors at Northwestern University may have found a treatment for Johnson. The treatment involves stem cells.
“We just knock down the immune system with immune-specific drugs, re-infuse the stem cells, and the stem cells regenerate a new immune system,” said Dr. Richard Burt of Northwestern University, who pioneered the revolutionary treatment.
Now the body that has been attacking Johnson could save her.
“These are my stem cells,” she said.
Dr. Karmella Haynes, a stem cell expert at Arizona State University said this is just the beginning for stem cell therapy using a person’s own stem cells.
“Just recently we’ve seen scientists start to develop stem cell therapies that address different types of diseases, spinal cord therapies, brain tissue diseases, replacing the heart muscle," Haynes said. "There is even an example of replacing a lost tooth.”
The treatment is risky, but for Johnson and her family the risk is outweighed by the potential that she could live a longer life. She will head to Chicago this June to undergo the procedure.
“The ultimate result would be that the disease is put into remission," she said. "I’d like to call it a cure for the future."
Johnson's treatment is costing her hundreds of thousands of dollars. She said her insurance company will not cover most of it because it is an experimental trial.
She is holding several fundraisers to help raise money to cover the costs of her bills, including a silent auction on May 9.
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