Heather Hearst knows all too well the misery lyme disease can bring. The summer before her freshman year at Williston, in 1986, she was bitten by a tick at her home on the Connecticut shore, just a few miles from the town that gives the disease its name. “I was so sick,” she recalls. “I had a heart murmur, no reflexes, Bell’s palsy. I was completely bedridden. And it was just weeks before school started. The school, the doctors, my parents [her father is Merritt Carlton ’60], everyone really didn’t want me to go to Williston, but I begged and pleaded.” The school granted her permission to start late, and she suffered through what she calls “one of the most depressing times of my life. I was homesick. I was miserable. I had no friends. I couldn’t read out loud because I had trouble pronouncing words. But I was not going to give up.”
Early antibiotic treatment and time helped Heather recover, although minor health issues would linger. By that spring she would be back to her old self, and she tried to put the experience behind her. For a while, she could: After graduating from the University of Denver, she worked for software companies in San Francisco, earned her master’s degree in career development, and became an art consultant. But then she got married, had kids, and moved to Maine, and now Lyme disease was in the news, and back in her life. “I’d read these stories and get emotional and tear up, and I was surprised that I was even having that reaction, because I had had Lyme disease and thought I had moved on,” she recalls. “All of a sudden, I’m a mom living in Maine, and every time my kids would run into the woods, to me it felt like they were running into traffic.”
As she began to research the issue, she was disturbed to discover that a preventable disease that had afflicted her 30 years ago was still causing so much pain. And so, in 2015, she decided to do something about it. She founded Project Lyme, a nonprofit advocacy organization dedicated to educating the public on the importance of prevention and early detection of Lyme and other tick-borne diseases. Her group uses advertising and social media to share prevention tips, stories from survivors, and the latest news about the disease, which affects an estimated 300,000 people a year in the United States and is the most common illness spread by ticks in the Northern Hemisphere.
“The scary thing is that, here in New England, we are fairly aware of Lyme disease and ticks,” Heather notes. “But it’s spreading west and north and south, and those places aren’t aware. People are getting really sick and not getting diagnosed in time. It’s a big problem.”
Many groups are already actively involved in other aspects of the Lyme disease issue, she notes, from patient advocates, to those seeking more funding for research, to those pushing for better treatments and wider recognition of the disease’s often confusing symptoms. “It’s one of these health problems that exemplifies all the problems in the medical world,” she explains. “Insurance companies don’t want to deal with it, there’s not a really good drug so pharma is not involved yet. It’s a mess.”
Given that, Heather has kept the focus of Project Lyme on education, branding, and awareness, areas that she knows well from her days in high tech. “There wasn’t really good messaging around it. People didn’t know the simple steps that you can take to prevent tick bites, and the early signs and symptoms so they could get to their physician. So I thought, well, that’s a place where I have some experience, and I like that kind of work. So that’s where I thought I could make a difference.”
She has spent the past two years building her team, raising money, and developing her messaging and materials. More recently, the group has held awareness events at the Mall of America in Minnesota and in Pennsylvania (a Lyme disease hot spot), and created educational materials for schools. After initial funding by Heather herself, the group this year raised enough money through donations and grants to be self-supporting. Heather continues to develop partnerships with other Lyme organizations and advocates, add new members to her board, and build her network.
“There are a lot of great groups doing a lot of different things,” she notes. “But we really need to unify as a community and work together to clarify the message so it’s more credible and people will hear it. That’s what I’m focusing on: bringing people together.”
Name: Heather Carlton Hearst ’90
Home: Camden, Maine
Work: Founder of Project Lyme, a nonprofit advocacy group that educates the public about the prevention and early detection of tick-borne diseases.
Photo Credit: Cig Harvey