To her, they’re a reminder on the journey she began eight years ago; the butterflies adorning her clothes and jewelry signify her fight to raise awareness about lymphedema, the treatable disease that killed her husband, Thomas.
According to Mayo Clinic, lymphedema affects anywhere from 200,000 to 3 million people per year in the United States alone. The disease strikes because the body’s lymphatic system is unable to flush lymph fluid wastes from the body, usually from obstructed lymph vessels, resulting in the swelling of arms or legs and sometimes other areas of the body. Although rare, some babies are born with lymphedema, and the disease has some sort of hereditary factor and is more common in cancer patients who have undergone radiation therapy.
While is no cure for lymphedema, treatments like special massages and compression garments for affected areas can give lymphedema patients long lives. Untreated, lymphedema can have serious consequences and be fatal – as it was for Jennifer’s husband, who died at 45 after not receiving proper treatment for his lymphedema.
“He had lymphedema from his scrotal area to his feet,” the long-time Johnson City resident said. “He barely could even move; he couldn't even walk. They weren't addressing his disease like they should have been.
“It shut his body down. It shut his liver and kidneys down. He went into cardiac arrest, he went into respiratory arrest. He had E. coli in his body because of the stagnant fluid just sitting there.”
Hovatter said that they noticed something was wrong in about 2003, when Thomas’ legs started sprouting strange nodes. Shortly afterward, his scrotal area began to swell, but trips to the doctor usually ended with frustration and no answers.
“In his case, he was being told that he was too fat; they weren't doing anything to treat the lymphedema,” Hovatter said. “He was being misdiagnosed”
Because lymphedema causes swelling of limbs that’s easily confused with obesity, Hovatter, who runs a local support group for those with the disease, Thomas’ story is all too familiar among lymphedema patients. Thomas got a hard diagnosis in 2007 from a dermatologist, but by then, it was too late.
Now, Hovatter is spreading lymphedema awareness in the community in her husband’s memory by holding fundraisers and events every year. Next year, Hovatter said she’s planning the first lymphedema awareness walk-a-thon and fishing tournament to preserve her late husband’s memory in activities he loved while also raising awareness of the disease.
On a national level, Hovatter is working to push the Lymphedema Treatment Act into law, which would cover treatment for patients with lymphedema under Medicare. Currently, Medicare doesn’t cover the cost of compression garments, which are essential for patients to keep the lymph fluid flowing through their bodies. The average lymphedema patient will spend about $800 per limb every six months for necessary compression garments, which is something Hovatter said she is fighting to change.
“It's a really big hassle for the patients to have to go through what they go through, let alone how to afford their treatment,” she said. “Sometimes it’s, 'OK, do I pay the power bill this month, or do I pay for treatment?' They shouldn't have to make that decision.”
Long-term, Hovatter said she hopes to open a lymphedema clinic in the Tri-Cities to treat patients with the disease. She said she plans to attend graduate school to get a psychology degree so she can use her education to help patients, especially seeing how her support group has helped patients as far away as Abingdon.
Her ultimate goal, she said, is to prevent more stories like Thomas’.
“I can't help him anymore, but I can help those in his memory,” she said.
Email Jessica Fuller at firstname.lastname@example.org. Follow Jessica on Twitter @fullerjf91. Like her on Facebook at www.facebook.com/jfullerJCP.