3 days ago
The Weight of Two Worlds: Lipo-Lymphedema and Obesity
When Shannon Ashley, now 43 years old, was in her tweens and teens, her legs were noticeably large.
Shannon Ashley
'Once I hit 12, my calves were unusually large, like tree trunks,' Ashley said. She tried to hide her outsized lower extremities, a contrast to her slender upper body, beneath wide-leg pants, and the size of her legs made clothes shopping difficult.
'Doctors insisted that I was just fat,' Ashley said. 'I took a free consultation with a plastic surgeon when I was 14 who said he could perform liposuction on my calves if I lost at least 20 pounds, but since I was already struggling with weight loss and dieting, that felt impossible, and my family wasn't in a position to pay for such a surgery anyway.'
David Amron, MD
David Amron, MD, is a leading lipedema specialist at The Roxbury Institute, with locations in Beverly Hills, California; Tucson, Arizona; and Salt Lake City, and a well-known national and international speaker and surgical advisor on the subject of lipedema and liposculpture. He has treated Ashley off and on since July 2021. He said that sort of reaction isn't all that unusual, although lipedema is actually very easy to spot once you know what you're looking for.
'It's a characteristic column-like presentation that wraps around the legs, typically from the groin area down, and their upper arms tend to become involved years or decades later, and sometimes in other areas, the upper buttock areas — it's a characteristic look; these patients are disproportionate, that's one thing,' said Amron, whose team, through the Advanced Lipedema Treatment Program at The Roxbury Institute, has performed more than 8000 successful lipedema-reduction surgeries. 'These patients also have tenderness to pressure, and finally, they have a family history — there are as many men with the lipedema gene as women, but they rarely show signs of it, so you have to look at both sides of the family.'
Research documented that two American physicians first chronicled lipedema at the Mayo Clinic in Minnesota in the 1940s. While they are credited with the initial identification and description, consistent with Amron's outline of a highly distinguishable presentation, lipedema remained relatively unknown and often misdiagnosed for decades after their initial findings. Amron said that today, awareness and understanding of the condition remain hit or miss, even among the clinical community.
'Why is it not being diagnosed is a really important thing — it's just ignored,' Amron said. 'I've been involved in this for over 25 years, and awareness has increased a little bit.'
In fact, he said, it has increased more among patients and social media and less among providers. He estimates that only 5%-10% of physicians know about lipedema.
'It's lack of awareness that's our biggest problem,' Amron said. 'That goes back to the fact that we still don't teach it in medical schools, and that's a problem.'
Holly Lofton, MD
Holly Lofton, MD, clinical associate professor of surgery and medicine and director of the Medical Weight Management Program at NYU Langone Health, New York City, agreed with Amron's assessment that the disease must be addressed in medical school curricula and said that providers can get up to speed with additional coursework.
'It is crucial that US medical schools allocate time to teach the lymphatic system as well as comprehensive education on lipedema education and treatment for future providers,' Lofton, who is not connected to Ashley's case, said.
Continuing medical education courses on lipedema can update current professionals on diagnostic criteria and treatment options. Increasing awareness by having patients share their stories in media can reduce the stigma related to lipedema and can overall help with patients feeling more comfortable with them talking to their providers about the condition, she said.
That's what Ashley, who began researching her symptoms after her body 'exploded' following the birth of her daughter in 2014, did. That research led her to the condition lipedema, which seemed to match what she was experiencing, but none of the doctors she consulted near her home outside of Chattanooga, Tennessee, knew what lipedema was. Ashley said they fell back on the assumption that her diet and eating habits must be the cause of her woes.
'My whole life, doctors told me what to eat or what not to eat and often recommended gastric bypass surgery, but they never actually asked me how I ate,' Ashley said. 'They just assumed I was doing this to myself.'
Lofton said that, unfortunately, this is not an unusual response from practitioners who are not accustomed to treating lipedema.
'Many patients with lipedema are advised that they need to treat obesity as a condition, when in fact weight loss does not treat lipedema, as it is an abnormal fat accumulation,' Lofton said. 'It doesn't respond to diet and exercise but instead to other treatments which focus on activating the lymphatic system.'
Ashley's health began to decline, and she said that, especially as a single mother, she felt a great deal of responsibility to both herself and her daughter to correct that progression. She knew she had to get an official diagnosis in order to start treatment, and after a great deal of continued research, she met with Amron in 2021.
Naming the Enemy
Unfortunately, by the time Ashley was able to get treatment with Amron, her lipedema had progressed to the point that her diagnosis was lipo-lymphedema. This condition arises when lipedema progresses to a point where it starts to impair the lymphatic system, leading to secondary lymphedema. Tissue can progress to the point that it becomes hard and inflamed, and Amron says that at worst, it becomes inoperable.
'Lipo-lymphedema occurs because of the chronic inflammation leading to the fibrosis and scar tissue that can begin to scar down the lymphatics and permanently damage the lymphatic capillaries and lymphatic circulation,' Amron explained. 'I find a pattern of a dense fibrosis is more prone to lipo-lymphedema. Generally, patterns of a loose fibrosis don't progress to lipo-lymphedema. So, it's something that we don't completely understand, but certain patients are more prone to this type of development.'
Over the course of 2022, Amron performed three lipedema removal surgeries on Ashley, all successful. Ashley, a writer who has been very open on Medium and elsewhere about her battle with lipo-lymphedema, encountered considerable swelling after her surgeries, which Amron said is due to the specific type of scarring that she had developed.
'I define four patterns of fibrosis that I see: Nodular, dense, granular, and more of a spider-like network. Shannon had primarily more of a spider-like, loose network,' Amron said. 'Those patients are more prone to swelling and moving a lot of fluid across membranes because they have a lot of loose connective tissues. In a patient like Shannon, I'll go in and remove 40 liters and make great improvements, and they'll still have consistent swelling.'
Amron's practice includes a diagnostic and preventive center where his associate Karen Herbst, MD, provides treatments for patients who experience these symptoms, including dealing with mast cell activation syndrome, evaluation of inflammatory markers, genetic testing, and other modalities.
Ashley had an additional battle to face: In July of 2022, decades of carrying the weight of what was now lipo-lymphedema caused her knees to erupt with severe pain. After battling for months just to get an MRI because of her still-high weight, she learned that a torn medial meniscus and several related knee injuries and conditions were causing her pain. This was a real setback for Ashley in terms of her ability to get around and care for herself and her daughter, particularly depressing after all she had been through to get the severely needed surgeries.
Lofton said that it's important that patients in situations such as Ashley's are treated with a holistic approach in order to achieve the best results.
'It's important to recognize that lipedema can lead to joint issues due to altered biomechanics and increased weight bearing. It is important that we as providers avoid biases based simply on BMI, or body mass index because this can be falsely elevated in patients with lipedema,' she said. 'Once a patient is diagnosed with lipedema, they can work with vascular surgeons, physical therapists, and other specialists to develop comprehensive treatment plans.'
Treatments and Outcomes
Ashley's knees have continued to be a battle, as no orthopedists have been willing to take her on due to her BMI, even at Amron's urging. However, in the spring of 2024, she signed on with a new nurse practitioner who 'actually had a basic understanding of lipedema.'
Then, after several months of physical therapy and trying a few rounds of medication for her knee pain, Ashley was able to get access to compounded tirzepatide injections, though still at a very high out-of-pocket cost. The results weren't instantaneous, but Ashley noticed rapid progress.
'After several weeks on the shots, but before I lost any real weight, my knees began to feel much less painful, and I quit getting such bad joint flares. I also quit swelling up so much in my calves,' she said. 'As of now, I've lost nearly 80 pounds, and my knee pain rarely bothers me. My range of motion in my knees is still poor, and I am still regaining my strength with physical therapy, but I am finally seeing some real progress.'
The dramatic effects of tirzepatide on patients with lipedema came as a surprise to Amron, who originally thought it would just be a complementary tool in the arsenal available to his patients.
'Initially, I assumed that it would be another weight loss strategy — it's almost like simply dieting, so you're taking in less food, so of course you're going to lose weight, but you're going to lose weight in the areas you don't have lipedema, and the areas you have lipedema aren't going to respond,' Amron said. 'We subsequently see that these medications can help with inflammation quite a bit.'
Ashley is still fighting her battle against lipo-lymphedema, including against the limitations placed on coverage of the disease by the insurance industry.
'I'm stuck with limits like only 20 total covered therapy sessions per year — that includes lymphedema therapy and physical therapy together, not each. They won't cover my tirzepatide injections despite my positive results,' Ashley said.
The issues at the heart of getting insurance companies to cover lipedema and expanding provider understanding of the disease are the same: Awareness and understanding. That's why Ashley has made her case public, and that's why she continues the fight.
