“The doctors would embarrass me. They would just say you have to lose weight,” said Marianne Klaczyinski, 69, who believes she has lived with lipedema most of her life.
She began to make adjustments after puberty and then even more adjustments after giving birth.
“I knew my structure and I knew there was something wrong, but no one was listening to me,” Klaczyinski said.
It wasn’t until 8 years ago that an expert from Boston, returning from a conference, talked about it.
“He said you have skinny hands, thin wrists, skinny ankles, and skinny feet. He said he knew what you had,” Klaczyinski recalled. This diagnosis: lipedema, which does not deserve to be accompanied by lymphedema, which is a swelling of the arms. or legs due to lymphatic fluid that builds up in the body. It is usually the result of cancer or cancer treatments.
The challenge is that, to doctors, lipedema can look like lymphedema. Or the patient is told that they are obese and want to lose weight.
“I was spending 3 hours in the gym,” Klaczyinski said. Hours in the pool. “
Not only would you not lose weight, but you would gain weight.
The same goes for Kathie Cole.
“It’s very emotional because other people think you’re not eating well, you’re not doing the right thing,” said Cole, who went so far as to undergo gastric bypass surgery in 2021.
His weight decreased, even in his arms and legs, which remained lumpy, swollen and very painful.
Then he heard about lipedema and learned what he was suffering from.
“Lipedema is a genuine disease,” said Dr. Erik Hoy, leader of plastic surgery at Kent Hospital. I’m familiar with a disease that many doctors just don’t know about.
“It’s painful, it gently causes bruising and it’s really a separate clinical entity,” Hoy said.
Lipedema is an abnormal, chronic accumulation of fat on both sides of the body, usually in the legs and also in the arms, and it is convenient that this is fueled by hormonal changes.
Cole and Klaczynski compression stockings.
Klaczynski used a lymphatic pump to decrease the swelling.
Neither does fat.
“The way to remove diseased tissue is to surgically remove it,” said Karie Rego, a former attorney and founder of Cover Lipedema, a patient advocacy group.
The surgical treatment is specialized liposuction, performed in particular by a professional plastic surgeon.
Largely due to lawsuits in recent years, top insurers now offer liposuction to some extent as a remedy for lipedema. But those who treat it and those who want it, Rego said, are harmed by a procedure that takes hours and requires skill. .
“Cover Lipedema’s project is to cover this disease like any other disease,” Rego said.
“It makes a big difference when other people sign up for Cover Lipedema to get coverage. More than 800 women, $50 million in coverage. “
Klaczynski’s insurer, Blue Cross and Blue Shield of Rhode Island, bans liposuction, meaning it’s not even a treatment, so consumers can’t even appeal a denial.
“It’s a disease, you want to be covered and Blue Cross and Blue Shield in Rhode Island want to be aware of that as well,” Rego said.
Blue Cross and Blue Shield of RI is one of two Blue Cross and Blue Shield insurers in the country that offers liposuction policy for lipedema.
Oregon is the other, and now it’s facing a lawsuit.
In a BCBSRI statement regarding the lack of coverage:
The patient advocacy group, Cover Lipedema, charges for its services, but Rego said this is a fraction of the policy patients receive.
He also advises patients to never pay money upfront, hoping that the amount will be covered and to consult a plastic surgeon specializing in liposuction for this condition.