One small bite from one tiny tick and life can change forever. The debilitating illnesses that tick bites bring, including Lyme disease, are at an all-time high. Experts say that tick-borne infections are likely 10 times higher than what is being reported.
Though Lyme disease and its consequences may not be top-of-mind for many, for those who knew Fresno’s Alex Hudson, it is. Alex lost her battle earlier this year to Lyme disease and the resulting Mast Cell Activation Syndrome (MCAS), an immunological condition that caused her body to have an allergic-like reaction to almost anything she ate or drank. After a decade of being shuttled in and out of hospitals, doctors’ offices and eventually being labeled a “medical mystery,” Alex finally received the proper diagnosis in May 2017. By then, it was too late. With one unnoticed bite, she had gone from a healthy, athletic 12 year old bundle of energy to bearing a decade-long burden of an incapacitating and unknown disease. Alex was just 22 when she died.
For Alex and so many others across our state and nation, the recently released report from the new Tick-Borne Disease Working Group is critical. This group of scientific, medical and policy experts and representatives of the patient community are tasked with providing impartial, evidence-based recommendations to Congress and the Health and Human Services (HHS) Secretary. The report can be found online.
This first report is especially crucial because it recommends a multifaceted response, including increases in federal resources to meet urgent research and patient care needs to address the tick-borne diseases that affect more than 300,000 Americans each year. The working group’s recommendations are numerous. Below are pertinent highlights:
▪ Research improved diagnostics: Current testing misses up to 60 percent of cases of early stage Lyme disease.
▪ Better target clinical research: There is currently no treatment that is 100 percent effective for any population.
▪ Better understand the impact of Lyme: This is especially relevant when it comes to the brain. Multiple organs, including the brain, are compromised when the infection spreads throughout the body.
▪ Expand knowledge of tick-borne disease transmission. Currently there is a wide gap in our understanding of how the Lyme bacteria is transmitted from mother to unborn child and is transmitted through blood and tissue donations.
▪ Educate more clinicians. This report recommends that clinicians across the nation need more Lyme education and awareness.
▪ Develop new rapid and accurate lab tests.
In the Valley, the Alex Hudson Lyme Foundation has been formed to help address the above issues of this often misdiagnosed, complicated disease. Two things happened when Alex learned of her disease: she devoted herself to learning as much as she could about Lyme disease and MCAS, and she informed her mother that she not only wanted to beat the disease, but just as important, she wanted to become a vessel of change for the Lyme and MCAS communities.
Unfortunately, after those 10 years of misdiagnoses, the disease took its final toll on Alex’s body. I have now taken up my daughter’s crusade and in June the Alex Hudson Lyme Foundation (AHLF) was formed and granted its 501c3 status. It has grown steadily ever since and the momentum continues.
In just six months, the AHLF is well on its way to fulfilling Alex’s mission to inform and educate others. From establishing and granting AHLF’s first Bluebird Scholarship, a $1,000 donation to a Lyme patient in need, to planning and executing AHLF’s inaugural annual fundraiser, “Tea for Alex,” AHLF continues to gather the help and support of the Fresno community to honor Alex’s legacy and raise resources to fight this disease. Recently, AHLF has garnered national attention and is now collaborating with several prestigious organizations to support future research strategies, including co-signing a 50k Research Grant with the Global Lyme Alliance, specifically targeting MCAS and carrying Alex’s name. AHLF is also working to promote state and federal legislation so no other child or adult will experience the “medical mystery” diagnosis again.
Get involved. Learn all you can about ticks and tickborne disease. Advocate and educate. Visit www.alexhudsonlymefoundation.org to learn more.
For general information on ticks, go to www.cdc.gov/ticks/index.html
Be the change, for Alex.
Jody Hudson is the director of operations for Catholic Charities and the founder of the Alex Hudson Lyme Foundation.