On Feb. 13, teams of golfers took to the course at the Florida Keys Country Club for the inaugural Ehlers-Danlos syndrome golf tournament presented by Keys Community Construction.
Estimated to affect up to 30% of the population with varying severity, Ehlers-Danlos syndrome (EDS) is a painful connective tissue disorder for which there is currently no treatment or cure. Those who suffer from the disease may have ligaments and tendons that tear easily, aneurysms, and organ ruptures, among other complications.
“EDS isn’t all that uncommon, but the problem is, it’s not known,” said Beth Lazzara, who organized the tournament with her husband Derrick. Beth suffers from the syndrome along with her three daughters. “Many people are misdiagnosed or underdiagnosed. Our whole goal is to increase awareness and get this out there.”
Half of the money raised by the tournament will go to the national Ehlers-Danlos Society to fund awareness and research initiatives, while the other half will stay with the Florida Keys Ehlers Danlos Society, a recently established nonprofit.
“Our long-term goal is to have enough funds to assist those who end up in wheelchairs and need assistance putting elevators in their homes,” said Lazzara. She added that the organization is also looking to establish a support group with a therapist, and will look to repeat this tournament in both Marathon and Key West.
“The biggest reason we wanted to set this up was to help other families like ours,” said Lazzara. “We’ve gone through it now for a number of years, so we’re able to share that knowledge and experience with other families.”
Photos by ALEX RICKERT/Keys Weekly
