How two mothers in Lyme, Connecticut helped uncover Lyme disease through their persistence and advocacy, leading to a vital medical discovery and community support.
May is both Lyme Disease Awareness Month and the month we celebrate Mother’s Day, which seems fitting because it was mothers who first sounded the alarm on a mysterious illness that would come to be known as Lyme disease. This month we salute Polly Murray and Judith Mensch, two mothers from Lyme, Connecticut whose persistence and advocacy led not only to the discovery of Borrelia burgdorferi, the spirochetal bacterium that causes Lyme disease, but also to the burgeoning supportive Lyme disease community we’re part of today.
I was first introduced to Polly Murray’s story in 2005, when I had just been diagnosed with Lyme disease, babesiosis, ehrlichiosis, and possible bartonella, eight years after an unknown tick bite caused a constellation of physical, neurologic, and cardiac symptoms. I was searching for a story similar to my own and found it in The Widening Circle, Murray’s 1996 memoir about her family’s decades-long journey with what they would eventually learn was tick-borne illness.
Like me, like so many Lyme and other tick-borne illness patients, Murray and her family went through years of misdiagnosis, for them starting in the 1960s. Like many of us, they were told their symptoms of erythema migrans (EM) rashes, joint pain, headaches, fatigue, and more were idiopathic. It seemed strange to Murray that so many members of her family—and, she’d soon discover, her town—were also sick.
Judith Mensch had the same concern. Also living in Lyme, Connecticut, Mensch’s then eight-year-old daughter’s knee became so swollen that she could hardly walk. Other children on their rural street suffered similar afflictions. Mensch’s daughter was diagnosed with juvenile rheumatoid arthritis. As Mensch told the New York Times for the 1976 article “A New Type of Arthritis Found in Lyme,” “I just felt it was too much of a coincidence for four children on one street to have arthritis, and I started calling parents to see if their kids had it. I kept at it is a hysterical mother.”
“Hysteria” is a term that has long been assigned to people, particularly women, with medical complaints that don’t fit into a simple diagnostic box. But Mensch and Murray both knew that their symptoms were not all in their heads. Separately, in 1975, they each called the Connecticut State Health Department. So set off the alarm that would eventually lead to the discovery of Lyme disease.
Each woman spoke with Dr. David Snydman, who invited Dr. Allen Steere, a Rheumatology fellow at Yale, to investigate 39 juvenile and 12 adult cases of inflammatory joint disease in Lyme, Old Lyme, and East Haddam, Connecticut. They realized that most of these patients had gotten sick in the summer months, the height of tick season. Over the next few years of research, 512 people across the U.S. were discovered to have “Lyme arthritis.” In 1982, Drs. Willy Burgdorfer and Alan Barbour isolated a tick-borne spirochete, and Borrelia burgdorferi, the causative agent of Lyme disease, was named.
The scientists made the medical breakthrough, but it was the mothers—and their lived experience—that set off that discovery.
The Widening Circle is so named because of the expanding EM rash that some people get with Lyme, and also because of the widening number of individuals afflicted with this insidious disease. Today, over 476,000 people are diagnosed annually with Lyme disease. Thanks to funding and efforts by Global Lyme Alliance, research and awareness are improving, though there’s still a long way to go.
Patient voices continue to be at the epicenter of the fight. Polly Murray’s book helped me to feel less alone, and it gave me the courage to share my own journey in GLA blogs and in my book One Tick Stopped the Clock. If you’d like to share your story, considering submitting it to GLA (for details, see “Lyme Disease Awareness Month: How You Can Get Involved”). Together, we can continue the charge that Polly Murray and Judith Mensch started 50 years ago.
***
