Australians Forced to Relocate for Treatment of Little-Known Condition, Lipoedema
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A growing number of Australians are making difficult life changes, including relocating across states, to access specialist care for lipoedema, a chronic and often misunderstood medical condition. The lack of awareness and specialized services is leaving patients in pain, facing financial hardship, and feeling isolated.
Three years ago, Karen Kinnersley faced a heartbreaking choice: leave her beloved Darwin home and move to Victoria – a place she hadn’t lived for two decades. Her decision wasn’t driven by career or lifestyle, but by a desperate need to access medical care for lipoedema, a condition she was diagnosed with while still living in the Northern Territory capital. “I loved it up there [in Darwin], my three kids were there, all my friends, but my health was declining, so I really needed to prioritize my health and access [to] services,” she explained.
Ms. Kinnersley now lives with stage 3 lipoedema, a hereditary condition affecting approximately 11% of people assigned female at birth. It’s characterized by the abnormal buildup of fatty tissue, primarily in the arms, hips, and legs, and is not significantly reduced by diet or exercise. The condition can cause pain,swelling,and mobility issues.
In Darwin, the challenges are particularly acute. “Most people with the condition lived in pain and shame, which compounded other underlying health issues,” she shared. “I keep telling my story to every medical professional I see, and they don’t seem to know about [lipoedema] or even believe me.” Potter noted that those in Darwin often rely on expensive telehealth appointments to connect with specialists. Other women with lipoedema have reported that Darwin’s humid climate exacerbates their symptoms, but the most meaningful challenge remains the absence of both formal and informal support networks.
The Urgent Need for Research and Medicare Support
Increased research funding is seen as a critical step toward securing Medicare support for lipoedema treatments. Bartlett explained that additional data is needed to strengthen an application for Medicare coverage. “We are missing key pieces of data that would help with that application,” she saeid. While some patients can access compression garment schemes, advocates argue that more complete support is essential. “I would like to see Medicare coverage… for things like lymphatic drainage, compression therapy in every state,” Bartlett urged. “being able to access private health insurance to cover hospital stays… would be really critically important.”
NT Health acknowledged the issue, stating that its occupational therapy departments at the Royal Darwin and Palmerston Regional hospitals provide specialist assessment and management options for patients with lipoedema. A spokesperson explained that patients receive individualized self-management plans that may include skin care, compression pumps and garments, lymphatic drainage, exercise, education, and referrals to other allied health providers.
Melbourne-based plastic surgeon Ramin Shayan, specializing in reconstructive treatments, underscored the importance of educating medical professionals. He warned that dismissing patient concerns can worsen psychological distress. “I think it’s the psychological impact of telling people that you need to go away and lose weight when in fact… what we’re talking about is not susceptible to normal weight loss measures,” Shayan explained. “There is the implication people are… being told that there’s something wrong with them, that you’re guilty of being lazy or gluttonous when actually it’s a real pathological disease that’s very harmful.”
A Financial Burden and a Call for Early Diagnosis
Back in regional Victoria, Ms. Kinnersley continues to spend between $100 and $140 each week on her treatments. Both Dr. Shayan and Ms. Kinnersley strongly encourage anyone suspecting they have lipoedema to seek early diagnosis and treatment to mitigate future pain and financial strain. To afford the surgeries she anticipates needing, Ms. Kinnersley is being forced to draw from her retirement fund. “It’s a really expensive condition to manage, and the only way I am going to access surgery is to dip into my superannuation,” she said, expressing concern that depleting her superannuation will leave her reliant on family, health, and welfare systems.
The experiences of Ms. kinnersley and others highlight a critical gap in Australian healthcare. Increased awareness, dedicated research, and expanded Medicare coverage are urgently needed to alleviate the suffering and financial burden faced by individuals living with lipoedema. .
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