A scroll through Aurora McCausland’s vibrant social media accounts reveals a captivating world where she shares her life as a young mom. With over 300,000 followers on TikTok and Instagram, McCausland showcases her dynamic lifestyle filled with dancing, cleaning, and tackling significant renovation projects in her home located in Utah. However, beneath this lively exterior lies a painful reality: McCausland is living with lipedema, a progressive and debilitating disease characterized by disproportionate fat accumulation in connective tissues, primarily affecting the legs, ankles, and hips.
McCausland, a 30-year-old mother of two, experiences debilitating symptoms that include throbbing pain in her legs, unpredictable swelling, and a heavy sensation akin to having cement-filled limbs. “Standing up can cause me to black out,” she explains, highlighting the challenges she faces in her daily life. “Getting down to play with my kids is really hard.” Despite her efforts to manage the pain through various methods such as compression garments, lymphatic drainage, and anti-inflammatory diets, McCausland acknowledges their limited effectiveness. “Those are helpful at potentially slowing down the disease,” notes her physician, Dr. David Smart, a dermatologic surgeon at the Roxbury Institute in Murray, Utah. “But really, only surgery helps to reverse the disease process.”
It’s essential to recognize that lipedema is not a result of obesity; it is a hormonally-driven inflammatory condition largely resistant to diet and exercise. “This goes against the traditional health dogma regarding normal fat,” explains Dr. Smart. While lipedema primarily affects women, there are no comprehensive estimates on its prevalence, although some studies suggest it may impact up to 11% of women. “We don’t have large-scale, population-based epidemiologic estimates,” states Dr. Aaron Aday, co-director of vascular medicine at Vanderbilt University Medical Center. “We lack blood tests and imaging studies to properly diagnose this condition.”
Many women first notice symptoms of lipedema during puberty, with the condition often worsening during significant hormonal changes such as pregnancy or menopause. McCausland first experienced symptoms in her early teens, mistaking them for growing pains. She recalls, “I thought it was just growing pains,” as she dealt with leg pain, swelling, and bruising from minor contact. Despite her active pursuits in dancing and CrossFit, she found the fat around her lower legs persistent. “I was told it was just excess weight, and if I worked out more and ate less, it would go away. But no matter what I did, my legs just hurt more.”
McCausland is not alone in her struggle; her five sisters exhibit similar symptoms, yet none were aware of the underlying condition until one sister underwent liposuction to alleviate her lower leg fat. However, typical liposuction is risky for lipedema patients due to the nature of the fat, which can feel like hard nodules beneath the skin. McCausland shares a harrowing account of her sister's experience: “The doctor ended up giving her third-degree internal burns all on her legs because he didn’t know that it wasn’t normal fat.”
According to Dr. Aday, specialized liposuction performed by a surgeon knowledgeable in lipedema is the most effective treatment. Unfortunately, McCausland's previous insurance provider, Cigna Healthcare, denied coverage for her necessary liposuction surgeries, totaling over $35,000. In a statement, Cigna acknowledged lipedema as a painful condition but claimed that McCausland did not meet the clinical criteria for coverage based on the information submitted by her physician. “They’re not looking at how I live; they’re looking at a photo and deciding I don’t look bad enough to be helped,” McCausland laments.
After switching to MotivHealth due to her husband’s job change, McCausland has already encountered challenges regarding coverage for her treatment. Despite her ongoing struggles, she remains hopeful that submitting additional documentation might change the outcome. A representative from MotivHealth did not respond to requests for comment, leaving McCausland in uncertainty.
Lipedema is classified into four stages, ranging from minor fat accumulation to severe leg disfigurement. However, the visual appearance does not always correlate with symptom severity. “You can have a Stage 1 patient with crippling pain and swelling, while someone with more advanced visible symptoms may not experience significant discomfort,” explains Dr. Smart. McCausland exemplifies this disparity, as she faces skepticism from some onlookers regarding her health based on her social media presence.
Dr. Smart emphasizes the importance of timely treatment, warning that delaying intervention can exacerbate inflammation, pain, and joint damage. “It’s really unfortunate for Aurora, because at that early stage, it is less likely that she gets insurance coverage,” he states. “They’re not considering the severity of her pain or her reduced mobility.”
Jonathan Kartt, CEO of the Lipedema Foundation, highlights that the pain experienced by women with lipedema can be objectively measured. Research in Germany has revealed that women with lipedema possess a lower pain threshold in affected areas. Aday is leading efforts to establish a national biobank of data on lipedema patients to facilitate further research and improve understanding of this under-recognized condition.
As McCausland continues to navigate her challenges with lipedema, her story sheds light on the urgent need for awareness and understanding of the disease. With the right support and treatment, she hopes to reclaim her life and enjoy the simple joys of motherhood without the burdens of pain and limitation.
