NEW YORK (CBSNewYork) — Imagine a disease where your legs keep growing out of control, not longer, but wider.

As CBS2’s Dr. Max Gomez reported, it’s not just a cosmetic issue, it could be life threatening.

“Walking can be tough because like I said, your alignment is off or whatever, and this stuff is heavy because once it – in the latest stage it actually turns fibrotic and like hardens and that makes it heavier,” Lipedema patient Katia Page said, “And then if you’ve got the fluid aspect on top of it, it’s like dragging sandbags, like big sandbags around.”

Actually, it’s amazing that Katia can walk at all. It’s not obesity, but something called stage 4 Lipedema, a genetic disease more common in women.

“There’s abnormal fat cells that don’t respond to the normal regulatory signals from your body to either grow or shrink. So basically lipedemic fat cells as opposed to normal fat cells. They will keep growing regardless of dietary restrictions, etc.” Dr. David Gruener, NYC Surgical Associates explained.

What makes Lipedema potentially life threatening is that all that fat compresses normal blood and lymph vessels, which leads to blood clots, skin ulcers, and recurrent infections.

Katia is hoping to avoid what the Lipedema did to her mother.

“She ended up having bilateral blood clots that went into her lungs and it killed her,” Page said.

Dr. Gruener is one of very few physicians trained to deal with severe Lipedema. He said the goal is not to restore normal appearance.

“To reduce the rate and severity of recurrence, spontaneous infections, which is what she had prior to her seeing me,” he said.

He does this by doing a special type of gentle liposuction that uses a water stream to dislodge the fat cells without damaging the vital blood and lymph vessels in the legs. He’s done four such procedures so far on Katia.

“And not one infection since, not even after the surgery during the healing process. That alone is a miracle,” she said.

Katia wants people with possible Lipedema to get treated early when the disease can be controlled and nearly normal appearance restored.

Katia’s next goal is to get healthier for her wedding in the spring.