Lipedema is a rare disease that causes disproportionate fat storage

By Gabrielle Olya
Updated July 20, 2016 12:30 PM
Credit: The Roxbury Institute

Two years ago, Emily Barltey began eating a clean diet and exercising one to two times every day in an attempt to lose weight.

While she noticed her stomach getting toned, the fat in her arms and legs didn’t seem to be going away.

“I was so frustrated,” Bartley, now 16, tells PEOPLE. “I did end up losing about 30 lbs., but after I lost the weight, it was obvious that my legs were much bigger than the rest of me.”

Bartley had long struggled with her weight and the self-consciousness she felt because of it.

“I ended up going to an independent study high school because I couldn’t handle being in a regular high school with normal kids when I was dealing with this,” she says. “I just wasn’t happy with myself.”

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Everything changed when her mother read an article about a rare disease called lipedema, which affects lipid metabolism and causes fat to be distributed unevenly in the body. It can also cause pain due to the inflammation and swelling.

Bartley realized the symptoms matched her own, and she received an official diagnosis when she met with lipedema treatment specialist Dr. David Amron.

“Lipedema is a very under-recognized fat storage disease,” Amron explains. “The symptoms are severe disproportion in a lot of areas, commonly in the legs, which causes them to appear column-like or tree-like. Lipedema is essentially unresponsive to diet and exercise.”

Bartley felt a sense of relief when she received the diagnosis.

“At first I was shocked just to know that it was even something that I had never heard about,” she says. “It made me feel good though. I was happy that it wasn’t my fault.”

To treat her lipedema, Amron performed two three-hour specialty liposuction procedures in May, one to remove the fat from her thighs, and another to remove the fat from her calves, ankles and upper arms.

“It’s not a simple procedure,” says Amron. “The surgery I do avoids general anesthesia, so I do it with a conscious patient. The reasons for that are it’s a safer way of doing it, but the main reason is to get the perfect result, you have to position the patient while you’re doing it. If you don’t approach this correctly, you can damage the lymphatics.”

Bartley felt a mix of emotions going into her surgeries.

“I was scared, but I was so excited just to have the fat taken out, and just to know that I was finally going to be done with it, and to know that I was going to be able to see the results,” she says. “I was definitely more excited than nervous!”

Post-surgery, Bartley recovered at home with compression garments, and works with a lymphatic specialist to reduce the swelling. While final results take six to 12 months, Bartley says she is already seeing and feeling some improvements.

“I feel better now when I work out – it feels more targeted, and I can feel my muscles better, and see more definition in my arms and legs,” she says. “Even though it’s not that big of a physical difference yet, the way that I feel is 100 percent better. The pain from it is pretty much gone completely, and to know that I’m going to be able to see results is so comforting, and gives me a lot of hope for the future.”