The Lipedema Queen Speaks: N.J. Woman Talks About Chronic, Fat-Based Illness

ESSEX COUNTY, NJ — Katia Page knows that the way to beat lipedema is simple: “Just do what you gotta do.”

Living with lipedema — an often-misunderstood disease that causes immense swelling of the legs and hips — isn’t easy. At one point, the East Orange resident’s legs were 50 inches wide, and she was in so much discomfort that she “couldn’t really do anything,” she said.

But just as bad as the physical pain was the social stigma that came when people assumed that her appearance was caused by an unhealthy diet, not medical issues.

• See related article: Her Legs Won’t Stop Growing: Bride-To-Be Battles Lipedema

In an effort to spread awareness about lipedema and reach out to others who may be suffering from the disease, Page recently spoke with Patch and shared some intimate details about how she’s learned to “fight the good fight and keep on living.”

TREATING LIPEDEMA

Page told Patch she was diagnosed with lipedema in 2006, but she’s been suffering with the symptoms since she was a young child.

“The doctors were just overlooking it,” she said. “My family took me to nutritionists. They had personal trainers for me. But a lot of people don’t understand. You can’t diet this away. You can’t exercise it away.”

Lipedema also has a hormone component that can “shift the disease into fast forward,” Page explained, adding that she has undergone hormone therapy in the past.

In an effort to battle her symptoms, Page recently embarked on a series of liposuction sessions that her doctor hopes will help to manage the disease and “set her current situation back 15 years.” Remaining active has also been helpful in her battle against lipedema, Page said.

“I’ve always exercised, swam in the pool and lifted weights,” she said. “But it gets hard because [lipedema] throws your gait off and makes your knees go in opposite directions.”

Despite the occasional bad day, Page said that lipedema doesn’t prevent her from doing many of the things that she loves. She just has to do them at her own pace.

“I still travel,” she told Patch. “I still love to dance and swim. Life is too short and I don’t want to die and say ‘I didn’t get a chance to do this.’ I’ve danced and won competitions and beauty pageants. I keep living, no matter what.”

In fact, there’s only one thing that lipedema has stopped Page from doing… going to amusement parks.

“It’s just too much walking,” she said, laughing.

Photo: James Harrison/Barcroft Productions

RETRIBUTION DAY

The experience of seeing herself on television and in the news has been “kind of weird” for Page. But in a way, it’s vindication, she told Patch.

Page recently appeared on a TLC special titled “My Legs Won’t Stop Growing” to discuss lipedema, an experience that she called bittersweet because her mother passed away just three days before she learned she was going to be on the show.

It was particularly hard for Page because her mother also suffered from lipedema and often claimed that nobody was taking her disease seriously.

“She always said ‘They won’t listen to me,’” Page sadly recalled. “But when I saw her pictures up there [during the TLC taping], it was like, ‘They’re finally listening.’”

Page paused before describing the feeling. “It was like, ‘Yeah… retribution day.’”

The New Jersey resident and ambassador for The Lipedema Project of NJ USA said that she thinks that the disease needs to have greater emphasis in medical school curricula, which may help solve what she called a chronic tendency to “underdiagnose” lipedema.

“A lot of doctors in the U.S. just don’t understand it,” she said.

WEDDING PLANS

Page, a bride-to-be, said that she and her fiancé, Kevin, were neighbors for years before they became involved romantically.

“We knew each other forever, but we didn’t get into a relationship until 2011,” said Page.

Page said that her fiancé has been there to assist with many aspects of her treatment, from cleaning wounds to helping her with medical devices and pumps.

“I can do it by myself, but it’s hard,” Page said. “He’s really there for me in those aspects.”

The couple originally planned to get married in February but had to postpone when Page underwent emergency surgery after a contact lens scraped her cornea. Their wedding is now on hiatus with a target goal of "sometime next year."

Still, Page knows that whenever it happens, the day will be a milestone in not only her life, but for her family members as well.

“I want my father to be able to walk me down the aisle,” Page said, her voice heavy with emotion. “My family believes in marriage. It just means a lot to us.”

BODY IMAGE

When asked if she had any advice for women who may be suffering from negative body images, Page gave Patch the following reply: “Wear what you want to wear and do what you want to do… Whether you’re size 2 or size 32, people are going to say something regardless.”

Page emphasized that everyone has something beautiful about themselves.

“Just have fun and don’t worry about the rest,” she advised. “Life is too short to worry about what everyone else is thinking. A lot of times, we build it up in our own heads because we feel insecure about it. That’s just a physical attribute. It’s not who I am.”

HOW YOU CAN HELP

“I started a nonprofit organization called The Lipedema Queen that helps raise money to help get compression garments, treatments, supplements and surgeries,” Page told Patch, adding that insurance doesn’t cover many of the needs associated with lipedema.

People can visit the nonprofit’s Facebook page here, or send donations via PayPal to thelipedemaqueen@yahoo.com.

But besides financial aid, some of the most helpful things people can do to show a lipedema patient they care is to simply be “patient and understanding,” Page said.

“I hear a lot of [lipedema] patients that tell me their family excludes them from certain things,” Page said. “Just ask them to come out. Give them an option. Who knows… they might feel good that day and want to push themselves.”

Photo 1 and 2: James Harrison/Barcroft Productions

Photo 3: Katia Page

Send local news tips to eric.kiefer@patch.com