Heather Hearst knows all too well the misery lyme disease can bring. The summer before her freshman year at 91大神, 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. 鈥淚 was so sick,鈥 she recalls. 鈥淚 had a heart murmur, no reflexes, Bell鈥檚 palsy. I was completely bedridden. And it was just weeks before school started. The school, the doctors, my parents [her father is Merritt Carlton 鈥60], everyone really didn鈥檛 want me to go to 91大神, but I begged and pleaded.鈥 The school granted her permission to start late, and she suffered through what she calls 鈥渙ne of the most depressing times of my life. I was homesick. I was miserable. I had no friends. I couldn鈥檛 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鈥檚 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. 鈥淚鈥檇 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,鈥 she recalls. 鈥淎ll of a sudden, I鈥檓 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.鈥
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.
鈥淭he scary thing is that, here in New England, we are fairly aware of Lyme disease and ticks,鈥 Heather notes. 鈥淏ut it鈥檚 spreading west and north and south, and those places aren鈥檛 aware. People are getting really sick and not getting diagnosed in time. It鈥檚 a big problem.鈥
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鈥檚 often confusing symptoms. 鈥淚t鈥檚 one of these health problems that exemplifies all the problems in the medical world,鈥 she explains. 鈥淚nsurance companies don鈥檛 want to deal with it, there鈥檚 not a really good drug so pharma is not involved yet. It鈥檚 a mess.鈥
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. 鈥淭here wasn鈥檛 really good messaging around it. People didn鈥檛 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鈥檚 a place where I have some experience, and I like that kind of work. So that鈥檚 where I thought I could make a difference.鈥
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.
鈥淭here are a lot of great groups doing a lot of different things,鈥 she notes. 鈥淏ut we really need to unify as a community and work together to clarify the message so it鈥檚 more credible and people will hear it. That鈥檚 what I鈥檓 focusing on: bringing people together.鈥
Name:聽Heather Carlton Hearst ’90
Home:聽Camden, Maine
Work:聽Founder of Project Lyme,聽a nonprofit advocacy group that educates the public about the prevention and early detection of tick-borne diseases.
Photo Credit: Cig Harvey