Time is tick-ing

Breakfast for four with Sen. Richard Blumenthal in the Capitol building: $2,000. Two tickets to the Victoria’s Secret fashion show and after party: $25,000. A one-week stay for up to 16 guests at Tommy Hilfiger’s private estate on his private island: $75,000. Finding the cure for Lyme disease: priceless.

This weekend, I had the privilege of attending the six-hour-long Time for Lyme gala held by the Lyme Research Alliance at the Greenwich Hyatt hotel, an event that featured both silent bidding wars and a boisterous live auction to benefit Lyme disease research.

Also notable was the sight of the largely middle-aged (if not older) audience dancing the night away to a live band and belting the lyrics of everything from the Four Seasons’ December, 1963 (Oh, What a Night) to Locked Out of Heaven by Bruno Mars.

Oh, what a night indeed.

My grandfather, who suffered from Lyme disease, was a member of the organization’s board of directors. When he passed away this summer, my dad took his place. Though I would not describe the evening as one for kids, my younger sister, cousin and I attended the event because our Poppi was going to be briefly acknowledged.

I waltzed into the dazzlingly decorated ballroom with virtually no expectations. I did not expect to be moved by the story of celebrity guest speaker and honoree Yolanda Foster, a star of Bravo’s Real Housewives of Beverly Hills, who spoke of the physical and emotional struggles that accompany misdiagnoses, rigorous treatments, and living with chronic Lyme. I did not expect to be shocked by the lack of proper diagnostic testing for Lyme disease, nor the immense impact the disease has on its victims. I did not expect to see Sen. Blumenthal step up to the podium and promise government involvement in the search for a cure.

Lyme disease is a quiet, often overlooked epidemic that lurks both literally and figuratively in our back yard.

Reported in 49 states, it is the most common tick-borne disease in the United States and affects hundreds of thousands of people every year, particularly in the northeastern United States. To my surprise, the highest reported incidence of Lyme is among the 5- to 14-year-old age group. For every case of Lyme disease reported, the Centers for Disease Control estimates that 10 go undetected, often with severe long-term consequences.

The disease attacks everything from the five senses to the respiratory, musculoskeletal and neurologic systems. The list of symptoms spans on almost ceaselessly in not only realms of physical pain but also in behavioral tolls and cognitive deterioration.

Current diagnostic testing is less than 70% accurate, according to the Lyme Research Alliance.

Despite, to be blunt, the borderline over-the-top displays of wealth in the form of glittering disco balls, full-length gowns, and sky-high bids that were all front and center at this event, I was deeply touched by the generosity of the people in that ballroom and the researchers who are committed to alleviating a disease of which I never realized the severity, even though it affected my own family.

I knew my grandpa had trouble walking, but I never correlated his bad legs with the “loss of muscle coordination” and “poor balance, difficulty walking” that can result from long-term Lyme.

I hope, through this column, to be able to raise even a tidbit of awareness regarding Lyme disease. After all, time is tick-ing as progress is being made. It is “Time for Lyme” to be cured.

 

Jane Gerstner is a junior at Convent of the Sacred Heart.

 

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