Karen Kinnersley relocated from Darwin to Victoria due to a lack of specialists capable of treating her lipoedema, a condition she was diagnosed with three years prior in the Northern Territory. She reported that her health was declining, necessitating access to services unavailable locally.
Lipoedema is a chronic, hereditary condition primarily affecting individuals assigned female at birth, leading to abnormal fatty tissue buildup and potential immobility. It is reported to affect 11% of this demographic. Advocates state that limited research in Australia contributes to a lack of awareness, resulting in patients incurring significant costs for treatments aimed at managing the condition and preserving mobility.
Jen Bartlett, director of Lipoedema Australia, expressed concerns about the lack of services for women nationwide, stating that increased research funding could improve understanding of the condition's prevalence. Leah Potter, a Darwin resident with stage 4 lipoedema, indicated that the absence of specialist services often leads to individuals managing the condition in isolation. She reported that medical professionals frequently lack knowledge or understanding of lipoedema, compelling many to rely on expensive telehealth options. Patients in Darwin also cited challenges from the humid climate and a lack of support groups.
Ms. Bartlett highlighted that additional research is crucial for Lipoedema Australia to apply for Medicare support, as key data is currently missing. She advocated for broader Medicare coverage for treatments such as lymphatic drainage and compression therapy across all states, and for private health insurance to include hospital stays related to the condition.
NT Health stated that its occupational therapy departments in Darwin hospitals offer specialized assessment and management plans for lipoedema patients. These plans include self-management strategies like skincare, compression methods, lymphatic drainage, exercises, education, and referrals.
Dr. Ramin Shayan, a plastic surgeon specializing in reconstructive treatments, emphasized the need for increased medical professional education regarding lipoedema. He noted that misattributing the condition to lifestyle choices can exacerbate patient distress, as the disease is not responsive to conventional weight loss methods and is often wrongly associated with laziness or gluttony.
Karen Kinnersley, now in regional Victoria, spends $100-$140 weekly on treatments. Both Dr. Shayan and Ms. Kinnersley recommended early diagnosis and treatment to potentially reduce future pain and costs. Ms. Kinnersley reported that she is contemplating using her retirement funds to cover future surgeries, expressing concerns about potential financial dependence on family and welfare systems.