Kathy’s Photo

Kathy Stangl was told she had six months left to live after a diagnosis of an incurable lung disease.

That was back in 2006.  The mother of three remembers eying scans of her lungs warily even before her doctor gave his prognosis. “That doesn’t look right,” she thought.

Kathy suffers from lymphangioleiomyomatosis (LAM), a rare disease that results in tumor-like muscle growth throughout the lungs and only affects women. “I’ve got six months,” she recalls saying in the wake of her diagnosis. “I’m not even going to be able to spell what’s going to kill me.”

She gets around these days with the help of a cane. “I’ll be sixty-one in October,” she says, “and I look ancient.”

One of her favorite photographs is a shot of her speaking with then-candidate Barack Obama from 2007, taken just before the Iowa caucuses propelled him to the forefront of the race for the Democratic nomination.

Both look so much younger in the photo that it’s hard to believe only five years have passed. Obama’s face is smooth and unlined, and the gray hairs that crept in during his term are nowhere to be seen yet.

That day, after promising to investigate additional research funding if he became president, Obama leaned towards her and said, “Tell me again what the short name of your disease is and I’ll pray for you and your family. I know what it’s like to lose a mom.” Obama’s mother died at 52 of ovarian cancer.

Though she was originally a Joe Biden supporter – Biden’s niece Caroline would frequently drive her and her family to political events – Kathy became a volunteer and supported Obama’s 2008 campaign.

“I haven’t been able to be as active this time,” she says, though she worries about the 2012 election’s outcome on health care. She had to leave a rally in Des Moines in an ambulance a few weeks ago. But at that same rally, a junior Obama staffer spied David Axelrod, Obama’s political director, circulating through the crowd shaking hands and snapping photos. The staffer pressed a business-sized manila envelope into Axelrod’s hands, told him Kathy’s story and exacted a promise to get Obama to sign it.

A few days later, that same manila envelope showed up at the local Obama field office affixed with a presidential signature and a short note to Kathy.  “It means a great deal to have it,” Kathy says. “It’s something to leave to my daughters when I’m gone.”

When she was first diagnosed, Kathy teamed up with the LAM Foundation to fight a planned reduction in federal spending on research that could help detect LAM earlier. She organized petitions and enlisted Iowa Senator Tom Harkin to her cause. “I just kept sending emails,” she says.

Kathy and Iowa Senator Tom Harkin

Their lobbying restored federal research dollars. “I learned what one word at the right time can do,” Kathy says. The lesson was what drove her to be involved in the presidential race of 2008, pushing all the candidates to support more research on LAM.

Kathy is fighting, lobbying and raising awareness, hoping a test can be developed to identify women who could be susceptible to LAM later in life. Even an incurable disease is more readily managed when women can plan around their risks, she says.  “My father used to say, ‘We were put here to be the hands of God on earth. You’d best use your time well.'”