Washington Evening Journal
http://washington-ia.villagesoup.com/p/1189136

Neighbors Growing Together | Sep 19, 2014

'Everybody has something'

By Linda Wenger | May 28, 2014
Photo by: Linda Wenger This picture of Lila De Penning was taken during a Sound of Washington rehearsal. Sound of Washington is a choir for special needs' adults. She is a longtime volunteer with the group.

Earlier this month, Lila De Penning of Washington completed the "Walk Your A.S. Off" event. A.S. is the abbreviation for Ankylosing Spondylitis and Axial Spondyloarthritis, which are chronic lifelong autoimmune diseases that cause extreme back pain, fatigue, and inflammation throughout the body including possible organ involvement. De Penning knows all about the diseases because she is has A.S. She is 62.

"My mother thinks I probably had this all of my life," De Penning said. "I always complained that my feet hurt and my back hurt."

She said that at age 5, when her family went to the county fair in Oskaloosa, she would ask her parents if she could sit down, and have them come back for her.

"Mom said, 'I know she isn't feeling good because 5-year-olds don't do that," she added.

In 1974, De Penning said she began having several health problems, including swollen feet, severe back pain, and inflammation of her skin. She spent two months in the hospital that year.

Later, when she had her first child, she said the doctors told her pregnancy could make the disease 50 percent worse or 50 percent better. Her symptoms improved for a time.

Over the years her neck began to fuse, and she fell and broke her hip due to the fusion of her bones. She recovered from the first broken hip, but she didn't recovered totally from a second broken hip.

"I have never walked right since," De Penning said.

Then her daughter Mindy began developing A.S. symptoms. Mindy died of complications a few years ago.

"She ended up getting staph infection and MRSA, and then the skin-eating disease," she said. "It was one thing after another."

You have to live your life regardless, she said.

"You can't stop," De Penning said. "I belong to a support group on the Internet, on Facebook."

She also said that everyone has something to cope with and A.S. is hers.

"I'm lucky," De Penning said. "I am lucky enough to have these good friends who run me around town, tell me if they think I did too much."

One of her favorite activities is being a member of the Sound of Washington Board. Sound of Washington is a choir for adults with special needs.

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