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November 27. 2013 8:23PM

Woman raising awareness in Bridgewater of rare lung disease

BRIDGEWATER — A year ago, Kathryn Steele had a wonderful Thanksgiving.

With her newborn daughter and her husband, she sat down to a beautiful meal with her parents at the family's home at 44 Mohawk Trail.

This year, she's returning to the Newfound Lake home with husband, U.S. Marine Capt. Adam Steele, and her 17-month-old daughter, Emma. But she's wondering if it may be one of her last Thanksgivings.

In May, one of her lungs collapsed and required surgery. In June, both lungs collapsed requiring another surgery. A biopsy revealed little dots on her lungs and brought a devastating diagnosis.

At age 29, Steele, a one-time Boston Marathon runner and former television news producer, had a rare, destructive, terminal lung disease called lymphangioleiomyomatosis, or LAM for short.

As Steele prepared for the drive to New Hampshire on Wednesday, she was feeling pretty good, good enough to run in today's Bridgewater Turkey Trot, which benefits the local Santa Fund. Besides helping local kids, she's running to publicize her disease, hoping to raise money for research that could find a cure.

She's coping. But she's still struggling to come to grips with her disease, and what doctors say is probably a short future with lots of breathing difficulties ahead.

"Up until June, I considered myself a normal, healthy, happy person, I had never heard of this disease," she said from her home in Virginia, where she teaches elementary school.

"I've had four lung surgeries," she said. "Now the doctors say I probably have 8-10 years, and then I'll probably need a lung transplant, but even with a transplant the survival rate is low."

In June and July, she was overwhelmed and in shock. In August, she learned about the LAM Foundation, which raises money for research and publicizes the need for research and funding. The foundation has helped her connect with other victims of the disease.

"It helped me a lot to learn more, and to meet other people who have it," she said, "although it's tough because they don't know how it progresses, and they don't know how to stop it."

The disease was discovered in the 1990s, and thus far, only 1,500 people worldwide have been diagnosed. The potential lifespan after diagnosis is 30 years, but LAM sufferers often die sooner. It almost exclusively affects women, usually during their childbearing years.

"Even the idea of living 30 years, if it could happen, would mean I'd die in my 50s, and who wants to die that early," she said, adding, "I'd take the 30 years."

She is in early stages of the disease. She was encouraged to learn that research has produced two trial drugs, one of which has shown promise in at least slowing the disease.

Her hope is that more research finds a cure and better treatments. For that to happen, money must be raised, which is why she doing things like running in the trot. She has a fundraising page at http://www.thelamfoundation.kintera.org, where she has so far raised $2,555.

dseufert@newstote.com


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