Baton Rouge woman shares struggles living with lymphedema, hoping to spread awareness

Healthline: Baton Rouge woman shares struggles living with Lymphedema
Published: Mar. 31, 2022 at 11:00 AM CDT|Updated: Mar. 31, 2022 at 11:26 AM CDT
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BATON ROUGE, La. (WAFB) - Three to five million Americans struggle with something called lymphedema.

Most physicians in the U.S. are taught about the lymphatic system for one hour or less during their four years of medical school.

A Baton Rouge woman is sharing her story, hoping to spread awareness.

“I just discovered it,” said Brenda Bohrer, a lymphedema patient. “I didn’t know what it was.”

Bohrer, 52, of Baton Rouge, has struggled with lymphedema for more than half of her life.

“I just knew that I was swelling, and when I started going to the doctors, they never told me anything really,” said Bohrer.

She and her doctors have tried ruling out what it could be since she was 23-years-old. Her journey brought her to Baton Rouge General’s Lymphedema Clinic in 2020. Doctors found out she was experiencing lymphatic fluid build-up, causing painful swelling in her legs.

“I was not able to walk for long periods of time,” said Bohrer. “I certainly couldn’t stand for any length of time. Within five minutes, I would need a chair to sit down on.”

“I think that it’s underappreciated,” said Dr. Dhaval Adhvaryu, Lymphatic Surgeon at Baton Rouge General. “I think that it’s not as well-known and it’s really hard to treat.”

Adhvaryu, Bohrer’s doctor, said this is common in cancer survivors.

It is also known as secondary lymphedema. Bohrer has the primary type, and doctors aren’t sure what caused it.

After seven months of preparation and new customized compression garments for her legs, Bohrer was ready for what turned out to be a game-changer: a suction-assisted protein lipectomy surgery or SAPL.

It’s like liposuction, where diseased fat tissue is removed to improve lymphatic flow and reduce swelling.

“It has brought me back some confidence,” said Bohrer. “It has brought back my ability to stand for longer periods of time. I still have to keep on top of things.”

She has to keep on top of things like wearing her compression all the time and watching out for cuts and mosquito bites on her legs. Bohrer hopes to educate others on her condition, so they know they’re not in this alone.

“It starts with physicians,” said Adhvaryu. “They have to be able to diagnose it and then they need to know where the patient has to go.”

Bohrer comes to the clinic once a month to keep everything at bay.

Medicare and many private insurance policies do not cover compression garments, wraps, or bandages for compression therapy.

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