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Brookfield woman's struggle with Lyme disease leads to global support

May 11, 2011

Deb LaBarbera, a Brookfield resident with chronic Lyme disease, made a simple request of her family and friends for her 48th birthday Saturday.

"My wish was that they didn't give me any gifts this year and instead join the Lace Up for Lyme Walk and help raise awareness for the disease," she said.

Thousands turned out for the Lace Up for Lyme Walk hosted by the Lyme Support Network at the Milwaukee County Zoo - but LaBarbera helped many more people around the world who couldn't attend show their support.

"I came up with the idea to use plastic lime-green table cloth to make flags to represent people who couldn't be there," she said. "It went from 50 people to 1,200 people reaching out to me."

LaBarbera made every flag by hand, distinguishing those for people who have lost their battle with the disease by a curling black ribbon.

"I found myself very emotional during the project," she said. "Especially when I was making flags for people who have died from Lyme disease."

Building a network

LaBarbera received only six weeks of treatment after being diagnosed with Lyme disease in 2004.

"I had to stop treatment because my insurance would no longer cover it. Many people in the medical community don't think chronic Lyme disease exists," she said.

In the following years, doctors diagnosed LaBarbera with conditions ranging from fibromyalgia to mental illness.

Her symptoms - migraines, nausea, muscle spasms, numbness - progressed and rendered her unable to work.

LaBarbera soon started a blog to document her struggle with the disease to raise awareness and build a support network for other victims.

"It has been incredible. It has given me a reason to get up in the morning," she said. "Many of us who suffer from it feel very isolated, but it's easy for us to relate to each other because in the grand scheme of things we're all going through the same journey."

It was LaBarbera's blog, and her vast online network of people touched by Lyme disease, that allowed her to rally worldwide support for the Lace Up for Lyme Walk.

Raising awareness

It isn't sympathy that LaBarbera seeks - she seeks awareness.

She urges people to check themselves for ticks after spending time outdoors and to watch for a rash that looks like a bulls-eye, an early indication of the disease.

"I could have gotten Lyme disease at any time during my life," LaBarbera said. "We spent our summers up north. I tramped around the woods, and back then we didn't know anything about it. A tick was like a mosquito or horse fly."

LaBarbera has found solace in reaching out to others to raise awareness and build support for the disease that has so changed her life.

And her mission continues: The 1,200 flags she made will be sent to Washington, D.C., for a rally later this month.

On the web

Visit Deb LaBarbera's blog documenting her life with Lyme disease at myblindspotjourney.com.

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