N. Babylon woman fights lymphedema

Kathy Hervey’s life is full of daily struggles with simple tasks that many others take for granted.

The retired elementary school teacher must wear special garments on her arm at all times and cannot touch anything hot, carry heavy groceries or get a regular manicure.

“I get looks from people on the street who are dying to know what the story is with my arm,” she said.

In April 2009, Hervey, 64, was in Florida helping her parents with heavy lifting when she noticed intense swelling in her right arm. Shortly after returning home to North Babylon, she was diagnosed with lymphedema.

Hervey, who was diagnosed with breast cancer in 2006, underwent a mastectomy and subsequently developed lymphedema, a condition that causes swelling of her arm. Hervey, like many others with lymphedema, did not notice any symptoms for several years.

Now, Hervey must give herself a massage on her arm every day and go to physical therapy for the necessary manual stimulation of the area. She also must wear a garment to compress her swelling that costs $1,000 for the sleeve, glove and fitting.

“This is not an ACE bandage that you go to the drugstore and buy,” Hervey said. “I thank God every day that I have good insurance.”

But Hervey understands that a lot of people can barely afford to buy one garment per year.

In order to raise money and help educate others on this disease, she joined the Lymphatic Research Foundation of Glen Cove and will be a coordinator of its second annual National Walk for Lymphedema and Lymphatic Diseases on Sept. 24 in East Meadow. The walk, beginning at 1 p.m. in Eisenhower Park, will be a celebration of the money raised for lymphatic research by its 20 to 25 teams.

The Lymphatic Research Foundation was founded in 1998 by Wendy Chaite, a former attorney, whose daughter was born with lymphedema.

“We kept being told by doctors ‘you’re just going to have to live with it,’” Chaite said of years of travelling with her family to find answers for her daughter. “I was making a lot of money at the time but I decided then I’d rather devote my life to the health of my daughter.”

The mission of the organization is to “raise funds in order to get closer to a cure,” said Kristin King, development associate for the Lymphatic Research Foundation.

The foundation, which will also be holding walks in Texas and Massachusetts in the fall, brought in 300 people and raised $35,000 last year at its East Meadow event, King said.

The September event already has about 15 teams and seven sponsors including Panera Bread and several lymphedema garment providers.

“This walk provides a way for people to gather their friends and family in a team and come out to talk others who have been affected by lymphatic diseases,” King said.

Hervey hopes the walk will bring lymphatic diseases to the forefront of medical concerns.

“It’s one of the littlest known diseases,” Hervey said. “Research needs to be done and we need to get the message out there. That’s why this walk is necessary.”

To register or find out more information about the walk, visit the organization's website.