Florida woman battles fatal lung disease
Rare condition creates holes in lungs
Rodi Alexander loves to sing. And to hear her belt out a rendition of "It's Raining Men," you'd never know she's living with a condition that's slowly destroying her lungs.
"I was given eight to 10 years to live, that was three years ago when I was diagnosed," Alexander said.
The Florida woman was diagnosed with a condition called Lymphangioleiomyomatosis, or LAM, a progressively fatal lung disease.
"It creates smooth muscle tissue and it causes you to lose your breath," said Alexander.
Dr. Marilyn Glassberg at the University of Miami said LAM typically strikes women in their childbearing years and appears to be linked to estrogen levels.
"The disease that's in the lung, pulmonary lymphangioleiomyomatosis, is a disease that's exclusively of women. Post-menopausal women can get this disease, but they've all been on hormone replacement so estrogen drives their disease," said Glassberg.
What's confounding to researchers is that women who develop LAM have no known genetic or environmental risk factors.
"There are no genes that have been isolated that show a predisposition to developing this disease, no risk factors, no geographic preference. It doesn't matter what part of the world you're in," said Glassberg.
Alexander started an organization called 'Little LAM' to help fund research into treatments that could slow the progression of the disease and increase the chances of survival.
"I want to raise money so that the University of Miami can do what they need to do and find a cure," Alexander said.
Until the, she believes living a healthy and happy life are her best defenses against the disease.
"When there's a will there's a way and there's definitely a will," she said.
Research has shown that a common antibiotic may help slow the progression of the disease in some women.
Researchers are also looking at natural ways to manage estrogen in women with LAM without affecting their quality of life.
For more information go to: www.thelamfoundation.org.