Monica White has spent the past 15 years of her life caring for herself, her two children, and husband, all of whom are infected with Lyme disease and multiple other tick-borne diseases (TBDs). Born on the East coast, Monica spent her childhood and early adulthood exploring the great outdoors of New England, graduating with a BS in Wildlife Management from the University of New Hampshire. After graduation, Monica moved west to Colorado and started her dream career, working for the US Forest Service as a wildlife biologist and wildland firefighter. That career was cut short as a result of TBDs, including Lyme disease and multiple other co-infections. Shortly after her diagnosis, Monica’s husband and children were also diagnosed with Lyme and several other TBDs. Her husband, a wildland firefighter and fuels specialist also with the US Forest Service, had numerous exposures across the US to environments with high risk for tick bites through both work and recreation. Her children began having health issues in infancy that may be have been attributed to the understudied mechanism of congenital TBD transmission. Without the eventual proper diagnosis for Monica, her family may never have reached an accurate diagnosis themselves.
When Monica and her family became ill, she was forced to begin a difficult journey, with roadblocks at every turn. Monica was misdiagnosed and denied access to Lyme disease testing for more than seven years as her health deteriorated to the point of disability. This devastating delay prolonged her time to accurate diagnosis and access to treatment, which is often most effective when administered in the early stages of infection. Her children and husband also faced similar hurdles as they too were not diagnosed or treated early on in their infections. Monica had to quickly learn how to navigate a complex health care system that she found to widely deny the existence of Lyme disease and other TBDs and to be even more resistant to the concept of various co-infections. She poured over insurance company policies and repeatedly filed appeals for denials of coverage for her and her family. She had to advocate for her children, and quickly learned about the disability process and the accommodations available to her children in order to secure their access to education. She worked through all of this by herself and will quickly point out that each victory she achieved was the result of her own trial and error. Early in this process, she often felt alone and unsupported, but was later empowered to contribute to TBD advocacy to help prevent others from suffering a similar fate.
Monica made a personal goal of sharing her family’s experiences with the hope of helping others to navigate their illnesses. She co-founded the Colorado Tick-Borne Disease Awareness Association (COTBDAA) in 2016 and currently serves as president of the group. The COTBDAA is an all-volunteer operated, non-profit organization that strives to increase awareness in Colorado about Lyme and other TBDs by educating health care providers, outdoor professionals, and school children, as well as assisting patients in navigating the difficult path to evaluation, diagnosis, and access to care. Each year Monica also partners with Center for Lyme Action to advocate for increased Federal funding of Lyme and other TBD research to better address the prevention, diagnosis, and treatment of these illnesses. She additionally serves on the board of Mothers Against Lyme, and has participated as a subcommittee member for two cycles of the US Department of Health and Human Services Tick-Borne Disease Working Group that examines research priorities and provides recommendations to Congress for addressing gaps in TBD research and patient care.
Through her own experiences and advocacy work, Monica developed a thorough understanding of the challenges faced by those suffering from TBDs: limitations in or lack of diagnostic assays, lack of treatments, the need for expanded research, and the physical, emotional, psychological, financial, and social devastation that patients and their families experience. Monica’s deep investment in the TBD community and concern for those suffering led her to a position on the TBDRP Programmatic Panel, where she is committed to helping the program fund the best research to help combat Lyme and other TBDs and bring hope to patients and caregivers. To this day, Monica and her family are still feeling the impacts of their delayed diagnoses, but they are optimistic that there will be a cure, and Monica has no plans to slow down until that happens.
Last updated Thursday, May 26, 2022