Doctor launches first research center of its kind to help women with chronic fat disorder

Eighteen years ago Dr. Lindy McHutchison's day-to-day looked a lot different than it does now.

A trained OB-GYN, she was living in San Diego and working as a physician at Kaiser Permanente. Then, in 2002, her family moved to North Carolina.

In 2007, she had vein treatments and instantly became intrigued and interested in venous and lymphatic medicine. She began training with notable doctors in the field, and eventually McHutchison took the position as the medical director of the Carolina Vein Center in Durham, where she is working to help patients with issues beyond just veins, such as lipedema.

"As an OB-GYN for over a decade, I took care of many women. At the vein center, my two worlds of OB-GYN, and venous and lymphatic medicine collided when I noticed that many of the female patients not only had venous disease, but lipedema as well," McHutchison said. "So many women would come into the center with vein issues and then I would realize that their leg issues were the result of lipedema."

Lipedema is a fat disorder that causes fat to abnormally accumulate in certain areas of the body, most commonly in the legs. It can also occur in the abdomen, hips, buttocks and, occasionally, the arms. While rare cases have been seen in men, it is almost exclusively found in women (99 percent of all cases), affecting 11 percent of all females.

Its exact cause is unknown and there is currently no cure for lipedema, only effective therapies for symptoms, which include swelling, pain and tenderness in the affected areas, and easy bruising.

It's speculated there is a genetic component to the condition as it's been seen across generations in families. The current consideration is that the micro vasculature of the veins and lymphatics are also culprits in the condition. Additionally, lipedema is believed to be triggered by life's hormonal events, such as puberty, pregnancy or perimenopause.

It's important to note that people with venous issues don't always have lipedema, but it is common for lipedema patients to complain of "achy, tired and heavy" legs, and seek out treatment from a vein doctor. It is a trend McHutchison took note of — she estimates 50 percent of lipedema patients also have venous issues.

Lipedema and finding a cause and cure for lipedema has become McHutchison's passion.

"About four years ago, we started a program where we began diagnosing lipedema in our vein patients. The program included educating and managing these patients, not only for their vein issues, but for their lipedema as well," said McHutchison, whose goals are to prevent progression, decrease triggers, and improve pain and discomfort for her lipedema patients. "People usually aren't aware that they have this condition, which is sometimes referred to as 'The Fat That's Not Your Fault' and most have never heard of lipedema. I'm on a mission to help these women with lipedema and I want to spread the word so women can become aware and stop blaming themselves for their situation."

Lipedema is believed to be under-diagnosed and is often confused with lymphedema — a swelling frequently seen in the legs caused by a blockage of the lymphatic system. However, there are some distinguishing traits.

In lipedema the leg swelling, size and shape are usually the same on both legs, and the feet are usually not puffy or swollen. Whereas lymphedema patients usually have swelling more on one leg than the other, and the feet and toes are frequently puffy and swollen.

Additionally, lipedema typically includes the following:

To advance lipedema diagnosis and management, McHutchison recently launched the Lipedema Center, "a program dedicated to helping find the cause and cure of lipedema." The research center hopes to establish effective lipedema treatments and therapies and aims to be a resource to help educate the community about the condition.

Working alongside McHutchison is Dr. Karen Herbst, a board-certified endocrinologist and world-renowned expert in lipedema and subcutaneous adipose tissue disorders.

Herbst has been evaluating, diagnosing and managing lipedema and SAT patients for 20 years. In 2015, she created a program in collaboration with the Lipedema Foundation and the Fat Disorder Research Society to ramp up efforts on lipedema and another common SAT disorder — Dercum's Disease.

TLC will be an independent research center that will collaborate with Herbst's efforts. Though based in Arizona, Herbst will be making several monthly trips to North Carolina to aid in TLC's research.

"Karen Herbst is a world leader — the guru — of lipedema. She is, without a doubt, the leading authority and expert in the United States on lipedema," McHutchison said. "In fact, she led the first U.S. consensus group meeting and is currently writing the first consensus article on the standard of care for lipedema in the United States."

She added, "Dr. Herbst is in the process of establishing several practice locations, and we are fortunate that she has chosen North Carolina to see east coast patients. Dr. Herbst will work part-time and collaborate at TLC and the Carolina Vein Center. She will lead the lipedema research team in a quest to find the cause and the cure for lipedema.”

Ellen Klingler, a CVC patient living with lipedema, said the partnership between Herbst and McHutchison feels timely, appropriate and moving.

"The fact that Dr. Herbst is taking this on with Dr. McHutchison speaks volumes about the fact that this is a problem that needs to be addressed and that women with lipedema need to be helped," she said. "It feels like a really powerful moment for this disease and its research."

TLC is conducting research studies on both lipedema and Dercum's Disease, including clinical trials. A clinical trial for a medication used to treat lipedema symptoms recently finished in 2019 and results are forthcoming. Additionally, TLC is focused on classifying diagnostic criteria and establishing effective treatments and therapies.

McHutchison has already developed tools like the Trampolette (a mini, footstool-like trampoline for patients to bounce on to encourage lymphatic drainage) and a customized soft muscle roller (also used to encourage drainage, but without bruising). Proceeds from the sales of these items will go toward lipedema research.

TLC will also be a resource to help educate patients on other effective therapies such as compression, lymphatic massage, vibration therapy and more.

Right now, treatments and research are being conducted inside the CVC, but there are site plans pending the City of Durham's approval to create an additional structure on the CVC property that will serve as dedicated space for the research center in the future.

"There's no other research center like this for lipedema in the mid-Atlantic. We are very excited," McHutchison said. "Our collaborative research team is passionate about lipedema, and with a dedicated lipedema center in North Carolina, and a research project led by Herbst, we hope to move the understanding of lipedema forward and bring relief for the millions of women suffering from lipedema."

The Lipedema Center at the Carolina Vein Center is located at 5309 Highgate Drive in Durham.