There is nothing quite as lonely as dealing with a disease that if often misunderstood and misdiagnosed, according to Trumbull resident Betsy Hopwood.
Hopwood’s husband, Mark, has had chronic Lyme disease for the past six years. He went undiagnosed by two years, according to Hopwood.
“We were very lucky to find the Lyme Research Alliance and have since found so many people right here in Trumbull who are dealing with Lyme,” Hopwood said.
More than 300,000 people contract Lyme disease yearly from the bite of a tick and, due to the fact that there isn’t a reliable test, many people go a long time without a proper diagnosis, according to the Lyme Research Alliance. Mark Hopwood saw 10 doctors over an 18-month period before finally getting properly diagnosed. During that time, Lyme Disease caused significant damage as he continues to experience severe bouts which leave him bed-ridden for days or weeks at a time, according to his wife.
Hopwood and her running group, Girls Gone Miles, are hosting a fundraiser for the Lyme Research Alliance in March. She and her husband are also starting a regional Lyme disease support group that will meet in Trumbull on the first Monday of every month.
“I feel that support is so crucial — it’s such a misunderstood disease,” Hopwood said. “It’s very isolating.”
Through Facebook, Hopwood found many parents who would turn to her for advice on tick bites and she has met a lot of people dealing with the disease firsthand.
“I couldn’t believe how many people right here in Trumbull are sick,” Hopwood said.
That information inspired her to start a support group. It will meet from 7 to 9 p.m., the first Monday of every month at the Helen Plumb building, 571 White Plains Road. You can find more on the group at its Facebook page, Facebook.com/TrumbullLyme.
Hopwood is also planning a big fundraiser for the Lyme Research Alliance on March 6, with the support of her running group. Girls Gone Miles have raised money for other local causes, but, since many have been touched by Lyme disease, they agreed to support the Alliance this year.
The Alliance aims to help find reliable and accurate testing for Lyme disease. Often, Hopwood said, blood tests come back negative, even when a patient does have Lyme. The organization also aims to find a cure.
On Friday March 6, JoyRide Cycling Studio in Westport has donated their spinning room for two classes, at 6:30 p.m. and 7:30 p.m. Each class has a suggested donation of $40 and all the proceeds go to the cause. There will also be raffles and gift baskets available. To find out how to make a contribution to the cause or reserve a bike, visit the fundraiser page at http://active.com/donate/ggmlyme
Hopwood said the fundraiser and the support group all serve important purposes in getting the word out about Lyme.
“We want to spread awareness that there are people in community out there struggling and there is support and other people who know what they are going through,” Hopwood said.