Charity Helps CT Lyme Disease Patients, $1K At A Time

CONNECTICUT — Catch Lyme disease early enough, and it's pretty easy to vanquish with antibiotics. Let it run rampant inside your system for a while and it is very difficult to get under control.

You may be excused if you didn't know that charming factoid, but insurance companies don't get the same pass. Yet they'll only cover two weeks of antibiotics, and then the patient is on their own. The average person suffering from the sickness can expect to be billed $20,000-$50,000 annually to treat chronic, or late stage Lyme disease, and none of that will be covered by insurance.

Jessica Snajder of Stratford didn't know any of this either, before her teenaged daughter was diagnosed with the disease. That reveal was 10 doctors and 18 months in the making, and by the time mother and daughter knew what they were up against in 2018, the sickness was late-stage, and insurance companies had declared them untouchable.

"We really had no idea that our battle was just beginning," Snajder said.

Chronic Lyme disease may have numerous symptoms, none of them pleasant. Arthritis with severe joint pain and swelling, particularly in the knees and other large joints, is often accompanied by intermittent pain in tendons and muscles. Severe headaches, numbness, shortness of breath and even inflammation of the brain and spinal cord can railroad a patient's entire life. It's little wonder, then, that the suicide rate for teens with Lyme disease is an under-reported 1,200 a year, according to Snajder.

She says she was "very fortunate" to be able to afford her daughter's treatments, but as she began to reach out to other Lyme disease families in Connecticut and online, she realized she was in the great minority.

"Over and over again I heard people say, 'if I just had a couple of hundred dollars, if I just had a thousand dollars, then I could get my kid a sauna, or get myself a nice blender to do some juicing,'" Snajder said. "Those little things that just don't get enough attention because most of your money is going towards very, very expensive doctors' treatments."

Many Lyme disease patients find relief through alternative treatments like infrared saunas and salt caves. These can provide an effective complement to traditional Lyme disease treatment (and are even less likely to be covered by insurance).

Lightning struck when she saw a question posted on a Facebook parents' group from a mom in need of a wheelchair for her seven-year-old child. Months earlier, Snajder had purchased a wheelchair for her own daughter, which she no longer needed.

"I don't believe in coincidences and therefore was not surprised to learn that on a national Facebook group, this mom that I just connected with lived only a few towns away from me in Connecticut," Snajder posted in her blog. "Over a cup of coffee, we shared our stories and found that although our daughters are more than ten years apart in age, we share many things in common. We both agreed that we needed more than an online community to share the questions, frustrations and heartaches of Lyme Disease."

Her charity, Partner in Lyme, was born over that cup of coffee. The 501(c)(3) gives $1,000 to Connecticut residents who have Lyme disease to take care of the "little things," like wheelchairs.

"My mission is to help people carry their burden, because Lyme disease is such a huge burden on the family and on the individual," Snajder said.

The charity was formed in February, a month before the coronavirus outbreak. The pandemic has caused her to cancel some scheduled fundraising initiatives, but it hasn't seemed to slow the charity's momentum.

"It's been growing ever since. We've had donors that have been anonymous who have been super-generous," she said. Notably, 100 percent of every donation is awarded to Lyme disease patients, and even though the awardees are exclusively Connecticut residents, there's no shortage of customers.

"There's 30,000 people in Connecticut affected by Lyme disease," Snajder said. Ideally, I'd love to raise enough money to help every single person who comes to me."

To donate — or to apply for assistance — see the Partner in Lyme website.