Lauryn, a first grader in northwestern Illinois’ Mercer County, came home from school and got off the bus, but could not go any further.
“She was too fatigued to make it into the house and it seemed as though her legs had stopped working,” Russell later explained.
Lauryn’s lymph nodes were swollen and she had a fever for more than a month. Unable to come up with any other explanation, doctors told Russell her daughter probably just had a virus and it would work itself out. But Russell would not accept such a dismissive diagnosis.
In and out of hospitals, Russell kept searching for an explanation for what was happening to her daughter. Low white blood cell counts led to a test for leukemia, which was eventually ruled out. Another doctor removed Lauryn’s tonsils and adenoids in search of an infection. That, too, did not help.
Over time, the little girl was diagnosed with chronic fatigue syndrome, leukopenia, Ehlers-Danlos hypermobility and many other misdiagnoses.
Doctors were stumped.
The one thing they all seemed to agree upon was that she did not have Lyme disease, because the three bullseye rashes Russell had noticed beneath Lauryn’s armpits did not fit the profile of the illness.
For three years this battle went on, with no answers. Finally, the break in the case came not from a doctor, but from a dog.
One day the Russell family’s dog suddenly became ill, dragging his legs and crying in pain. Russell noticed he had a bullseye rash, just like the one she had noticed on Lauryn long ago. The veterinarian diagnosed the dog with Lyme disease.
“One of the greatest challenges to overcome with Lyme disease is the fact that it can present the same symptoms as so many other, much more common illnesses,” says Rep. Dan Swanson, who met the Russell family shortly after he took office in 2017. “Lauryn’s story is tragically familiar to many who have contracted Lyme disease because they, too, have heard doctors shrug off their symptoms as a common virus like the flu or something less serious than what they are really dealing with.”
With this diagnosis in hand, Russell now had a true lead on what might be affecting her daughter. And she was right. After years of suffering, Lauryn was eventually, correctly, diagnosed with late-stage Lyme disease.
Lauryn fought for four years to get her life back, finally entering remission in 2016.
Having survived and recovered from a disease which made her unable to get out of bed some days, Lauryn might have celebrated her newfound health and put the whole episode behind her. But she couldn’t do that. Neither could her mother.
Neither wanted to see another child suffer the way Lauryn had. Neither wanted to see another family go through the years of pain and worry that the Russells had endured. So they turned to advocacy, founding the Illinois Lyme Association.
"We are making great strides in our mission to bring education and awareness of tick-borne diseases. We are excited and just getting started! We have accomplished so much in a little amount of time and have been meeting with providers and hospitals to bring awareness to the medical field,” Russell said.
They found an ally in Rep. Swanson.
“Once a patient and a doctor finally are able to correctly identify an illness as Lyme disease, they face a long, grueling battle with a very stubborn sickness,” Swanson said.
Lyme disease can take weeks or months of strong antibiotic treatment to overcome, a course of treatment which sometimes extended beyond the standard recommendations for antibiotic treatments and even the length of coverage allowed by many health insurance policies. In April 2018 Swanson passed legislation, the Lauryn Russell Lyme Disease Prevention and Protection Law, to allow physicians to prescribe more aggressive treatments for Lyme Disease without fear of disciplinary action.
The next year, Swanson passed legislation to require insurance companies to cover the full length of antibiotic treatment for Lyme disease.
“The ability to receive treatment when you have previously been insufficiently treated, is life-changing,” Swanson said upon the passage of the bill in May 2019. “By mandating insurance coverage of the long-term antibiotic treatment needed for some patients, we are putting another piece of the puzzle into place for these patients.”
Of course, the best treatment for Lyme disease is to avoid contracting it in the first place. For that reason, advocacy efforts have also been focused on education and prevention. Swanson and Russell serve on the Illinois Department of Public Health’s Lyme disease task force.
Lyme disease is spread by the black-legged, or deer tick, which is found throughout Illinois and many other states. According to the Illinois Natural History Survey, nearly 40% of tested deer ticks were positive carriers of the bacteria that causes Lyme disease. Those who spend a lot of time outdoors, whether for work or leisure, have an increased likelihood of encountering an infected tick. As the Russell family learned, pets are not immune to the disease either. The black-legged tick has been confirmed or reported in 84 of Illinois’ 102 counties, primarily in the northern half of the state, but also in southernmost Illinois’ Shawnee National Forest. A University of Illinois study found some of the highest counts of black-legged ticks were in Lake and DuPage counties, along the Wisconsin border and in central Illinois’ Macon County. (See more the new tools the Illinois Department of Public Health uses to identify ticks.)
Wear long clothing and treat that clothing with 0.5% permethrin insecticide when going into wooded areas or areas with tall grass where ticks might be present. Applying insect repellent containing at least 20% DEET to exposed skin and clothing can provide further protection. Once back indoors, check for any ticks which might have attached themselves. The more time a tick is attached the greater the risk of infection.
If you find a tick, remove it with fine-tipped tweezers, grasping it as close to the skin as possible and pulling slowly and steadily upward with even pressure to reduce the risk of disease transmission. You can preserve the tick in a container or plastic bag with a moist cotton ball for potential identification or testing.
The bullseye rash which Lauryn initially presented with is a good indicator of Lyme, but it only occurs in about half of all infections. Other symptoms include fatigue, fever, chills, headaches, muscle and joint pain, neck pain and an overall unwell feeling. Some Lyme infections evade an initial diagnosis because these symptoms are common to other illnesses and because it could take as long as six weeks for enough Lyme antibodies to develop to be detected on a test.
Through their work with the Illinois Lyme Association, the Russell family continues to advocate for better treatments for those with Lyme, and better education and prevention to keep others from ever encountering it in the first place. They have traveled the state, speaking to groups and bringing awareness of the dangers of Lyme disease, how to recognize it and how to avoid it altogether. Lauryn Russell came to Springfield again in the spring of 2024. Now a high school junior, she spoke to the Elementary and Secondary Education committee about legislation to develop guidelines for schools if a nurse or other school personnel removes a tick from a student.
Their advocacy is not likely to end anytime soon. Swanson recalls his first impression of Jennifer Russell, one which has been reinforced over the years that he has carried the banner of their cause in the legislature.
“There is no force on Earth like the mother of a sick child,” he says.
Wear long clothing and treat that clothing with 0.5% permethrin insecticide when going into wooded areas or areas with tall grass where ticks might be present. Applying insect repellent containing at least 20% DEET to exposed skin and clothing can provide further protection. Once back indoors, check for any ticks which might have attached themselves. The more time a tick is attached the greater the risk of infection.
If you find a tick, remove it with fine-tipped tweezers, grasping it as close to the skin as possible and pulling slowly and steadily upward with even pressure to reduce the risk of disease transmission. You can preserve the tick in a container or plastic bag with a moist cotton ball for potential identification or testing.
The bullseye rash which Lauryn initially presented with is a good indicator of Lyme, but it only occurs in about half of all infections. Other symptoms include fatigue, fever, chills, headaches, muscle and joint pain, neck pain and an overall unwell feeling. Some Lyme infections evade an initial diagnosis because these symptoms are common to other illnesses and because it could take as long as six weeks for enough Lyme antibodies to develop to be detected on a test.
Through their work with the Illinois Lyme Association, the Russell family continues to advocate for better treatments for those with Lyme, and better education and prevention to keep others from ever encountering it in the first place. They have traveled the state, speaking to groups and bringing awareness of the dangers of Lyme disease, how to recognize it and how to avoid it altogether. Lauryn Russell came to Springfield again in the spring of 2024. Now a high school junior, she spoke to the Elementary and Secondary Education committee about legislation to develop guidelines for schools if a nurse or other school personnel removes a tick from a student.
Their advocacy is not likely to end anytime soon. Swanson recalls his first impression of Jennifer Russell, one which has been reinforced over the years that he has carried the banner of their cause in the legislature.
“There is no force on Earth like the mother of a sick child,” he says.
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Watch the video below to learn more about the new tools the Illinois Department of Public Health uses to identify ticks: