Struggles of Aurora McCausland: A Mother’s Battle with Lipedema

Scrolling through Aurora McCausland’s incredibly popular social media — boasting over 300,000 followers on TikTok and Instagram — you’d see a vibrant young mom who appears to juggle dancing, cleaning, and major home renovations in Utah. But beneath that lively exterior lies a painful struggle: McCausland suffers from lipedema, a progressive disease that causes an abnormal buildup of fat in the connective tissue, particularly around her legs, ankles, and hips.

She describes her experience vividly; her legs throb with pain, swell unexpectedly, and feel as if they’re heavy with cement. This condition significantly frustrates her, especially as a mother to two young kids. Just standing can sometimes lead her to blackout.

“I feel like I should be able to do simple things, but they cause pain very quickly, and I often have to step back,” McCausland, 30, from West Valley City, Utah, shares. “It’s tough to get down and play with my kids.”

To cope with the pain, she has tried various methods like compression garments, lymphatic drainage, and anti-inflammatory diets, but finds only limited relief.

Her doctor, Dr. David Smart, states, “These treatments may help slow the disease, but surgery is the only way to reverse it.” He performs a specific type of liposuction at the Roxbury Institute in Utah, which removes the problematic tissue and aims to restore mobility.

This procedure isn’t cosmetic. Importantly, lipedema is not tied to obesity; it doesn’t stem from overeating or lack of exercise. It’s a hormonally driven inflammatory condition that resists typical measures like dieting and exercising.

“This goes against traditional health beliefs surrounding weight,” Smart notes.

Mostly impacting women, lipedema remains under-researched, making it difficult to provide solid statistics on its prevalence. Some estimates suggest it affects up to 11% of women, but “we lack large-scale epidemiological data,” says Dr. Aaron Aday from Vanderbilt University Medical Center.

Denied Relief

Many women notice lipedema symptoms during puberty, with the condition often worsening during hormonal changes like pregnancy or menopause.

McCausland recalls her first symptoms appearing in her early teens — pain, swelling, and bruising even from light touches. Initially, she thought it was just growing pains. Despite being active through dancing and CrossFit, she couldn’t reduce the fat accumulation around her ankles.

Yet, medical professionals dismissed her concerns as mere excess weight. “I was told that if I just worked out more and ate less, it would go away,” she recalls. “But nothing changed. I was doing everything right and feeling worse.”

Interestingly, McCausland’s five sisters also faced similar issues, but they were unaware of what was happening until one sister underwent liposuction to address her lower leg size.

However, the fat associated with lipedema differs from typical fat; it often feels firm, resembling nodules beneath the skin, and using regular liposuction can be risky for these patients.

It took too long for her sister to receive proper treatment, leading to severe burns during the procedure. “The doctor didn’t understand it wasn’t normal fat and kept trying to remove it,” she explains, reflecting on the unfortunate outcome. “Obviously, neither my sister nor the doctor realized she had this condition.”

According to Aday, lipedema specialists can perform the most effective liposuction, sometimes requiring repeat procedures for lasting relief.

McCausland’s recommended treatment involved two surgeries, estimated at over $35,000. Sadly, her previous insurer, Cigna Healthcare, denied coverage for both.

Cigna stated, “Lipedema is painful and we do cover various treatments, including liposuction, for those who meet clinical criteria. Ms. McCausland’s case was reviewed by multiple doctors, including a plastic surgeon specializing in lipedema, and at that time, she did not meet the criteria.”

McCausland feels her denial stemmed from not appearing “sick enough,” and she speculates that her social media portrayal influenced their decision. “They said it simply wasn’t medically necessary,” she says, shaking her head at the absurdity of it all. “They’re basing their judgment on a photo and not considering how I truly live.”

Cigna asserts that social media does not factor into their decisions, stating their evaluations rely solely on clinical information from patients’ doctors in line with coverage policies.

Following her husband’s job change, McCausland switched to MotivHealth. However, during a recent call, she was informed this procedure isn’t typically covered, though she could submit more documentation for reconsideration. Attempts to obtain comments from MotivHealth went unanswered.

A Long Under-Recognized Disease

Lipedema progresses through four stages, visually identified by different fat accumulation levels, from minor (Stage 1) to severe disfigurement (Stage 4). Yet symptoms may not directly correlate with the visible appearance of the disease.

“A Stage 1 patient can experience severe pain, while someone further along might face milder symptoms,” Smart explains.

McCausland exemplifies this; despite her struggles, she doesn’t fit the stereotype of someone suffering, as some commenters on her social media point out.

“I’ve had people say, ‘I don’t see your struggle; you look fine,’” she recalls. This reflects why lipedema remains largely unrecognized.

“For decades, patients have been told to simply exercise and lose weight when the reality is much more complex,” Smart adds, highlighting the dangers of delaying treatment. Without it, lipedema can worsen, leading to inflammation and joint damage.

“It’s unfortunate for Aurora; insurers overlook symptom severity. They don’t consider her pain, decreased mobility, or her daily life challenges,” he says.

Jonathan Kartt, CEO of the Lipedema Foundation, mentions that the pain from lipedema can be measured objectively. Research indicates women with the condition display a lower pain threshold in affected areas, which could potentially assist in diagnosis.

Aday is also working to create a national biobank to gather information on lipedema patients and encourage further research.

As interest grows, researchers are looking at the possibility of mainstream GLP-1 drugs, like Ozempic and Wegovy, originally developed for diabetes and obesity, to see if they can benefit lipedema patients. Aday aims to secure funding for such studies.