2024 WINTER ADVOCACY

Congenital Lyme disease is under-recognized by medical professionals Phyllis Bedford delivered the following public comment at the HHS Community Engagement Initiative meeting in San Francisco in June 2024.

By Phyllis Bedford

LymeLight Foundation L ymeLight Foundation is a national nonprofit dedicated to providing medical treatment grants of up to $10,000 to children and young adults through age 25. We are the largest Lyme foundation with treatment grants as its main mission. Since our inception in 2011, we have given 9.8 million dollars to 1385 individuals in 49 states.

we have given 9.8 million dollars
to 1385 individuals
in 49 states

There are so many things I could share about our population but today I want to focus on congenital Lyme or vertical (mother to baby) transmission of Lyme disease.

We estimate that 50 percent, or 700 of our grant recipients, were born with Lyme disease. How did we determine this? We looked through three years of recipient’s applications and determined which recipients fit a clinical picture of congenital Lyme. All of these children did not have a bull’s-eye rash and all of them had one or more family member also diagnosed with Lyme disease and many of them had a doctor’s letter stating a congenital Lyme diagnosis.

Congenital Lyme Takes a Devastating Emotional Toll

congenital LymeWe hear from mothers who have Lyme disease with an ill child that they are devastated when a doctor tells them it was possible that they passed Lyme to their child. We have gotten to know families who believe Lyme disease was passed down through as many as four generations.

Many other infections are known to be transmitted in utero: West Nile, Zika virus, syphilis and Chagas disease. These diseases have diagnostic and treatment guidelines to address pregnancy and congenital infection. Yet, for Lyme disease, the number one vector-borne disease in the United States and Europe, the same is not true. The physicians are left without tools to help, and impacted families face significant barriers to access to care………..Join or login below to continue reading.

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