She Thought She Would Never Live To See Her Grandchildren

"I am just so thankful. I can do pretty much everything I want to."

For two years, Rhonda Officer watched helplessly as her breathing capacity dropped relentlessly to half what it should have been. Ms. Officer suffers a rare disease, lymphangioleiomyomatosis (LAM), that strikes women of child-bearing age. There was no effective treatment for the abnormal growth of smooth muscle cells that were destroying her lungs. Ms. Officer, mother of three, thought she would never live to see her grandchildren.

Her National Jewish Health doctor, Jeffrey Swigris, DO, wasn’t ready to give up. Research done at National Jewish Health and other centers around the nation had suggested that a signaling pathway known as mTOR, was involved in the disease. Sirolimus, an immune suppressive medication used to treat several forms of cancer, blocks that pathway.

So, with Ms. Officer’s consent, Dr. Swigris initiated off-label use of the medication. In the two and a half years since Ms. Officer began taking sirolimus, her lung function has completely stabilized. She recently walked a half marathon, has joined a gym and begun competitive weight lifting.

“I am just so thankful,” said Ms. Officer. “I can do pretty much everything I want to do.”

In March 2011, researchers including Kevin Brown, MD, and Gregory Downey, MD, at National Jewish Health reported that Ms. Officer’s experience was not a fluke. In a trial reported in The New England Journal of Medicine, sirolimus essentially halted lung-function decline among LAM patients. Drs. Brown and Downey are co-directors of the LAM clinic at National Jewish Health, one of the earliest in the nation to treat and research the disease. Dr. Downey also serves on the LAM foundation’s Scientific Advisory Board.

“This is a textbook case of successful bench-to-bedside science,” said Dr. Downey. “Basic scientific discoveries have been translated into medications, bringing the first effective medical therapy to women with LAM.”



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