Perreault Magazine - 34 -
“I had no idea that a tick bite
could turn my life upside down”
- Lori Mattix
Patients say they are angry that Lyme disease is ignored by the government and the medical establishment, and that insurance coverage of Lyme treatment is often denied. Both in person and via the Internet, they are banding together to work for change. In May 2014, Lyme disease advocates rallied in more than 20 countries around the world and in dozens of cities throughout the US.
Grabbing the most attention in the press and on social media was “The Mayday Project.” Some 200 people demonstrated for two days outside the IDSA’s national headquarters in Arlington, Virginia, protesting the Lyme guidelines. Elsewhere, Mattix joined forces with other Los Angeles-area Lyme advocates at Santa Monica’s Palisades Park. Amid speakers, musicians and dogs adorned in Lyme awareness T-shirts, people shared their personal stories and brainstormed ways to get the word out about Lyme disease.
The most important message that Mattix wants to share is simply awareness. “I had no idea that a tick bite could turn my life upside down,” she says ruefully. “If I’d had any inkling, I would have worn repellent, I would have checked myself for ticks, I would have paid more attention to that rash on my arm.”
With a big sigh, she adds: “That’s the message I want to get out most. You have to know about this. You have to be aware.”
Over the last few years, a number of celebrities have talked forthrightly with the press about their own experiences with Lyme disease.
Details vary, but certain themes are common: the sudden emergence of mysterious health problems; the fact that multiple doctors couldn’t figure out what was wrong; and that after finally being diagnosed, treatment was a long and bumpy road.
Singer/songwriter Debbie Gibson started noticing strange symptoms in early 2013—intense back pain, severe allergic reactions to food, feeling like she was being zapped by electrical current. After many doctors failed to identify the problem, Gibson finally found out she had Lyme disease and began treatment. In 2014, she went public with the experience, first in her blog and then via channels such as Access Hollywood, ABC News and USA Today.
Actress/model Yolanda Foster first realized there was something wrong while filming the TV show Real Housewives of Beverly Hills. She went to dozens of doctors before finally finding out she has Lyme disease. She has traveled across the country and around the world in search of healing. Recently, she has tweeted about starting a new treatment protocol in Mexico.
Musician and “riot grrrl” Kathleen Hanna, at the peak her popularity in 2005, suddenly dropped out of sight. As revealed in the 2013 documentary The Punk Singer, Hanna suffered from Lyme disease, although she didn’t know it at the time. It took several years to get diagnosed and treated. Eventually, she formed a new band called The Julie Ruin. Unfortunately, the group’s summer 2014 tour had to be called off after Hanna’s relapse of Lyme symptoms.
Celebrities with
Lyme disease