The struggle of lipoedema patients in regional Australia: A tale of healthcare disparities
The harsh reality of regional healthcare disparities is leaving lipoedema patients without adequate care, forcing them to make difficult decisions and face financial burdens.
Three years ago, Karen Kinnersley made a gut-wrenching decision to leave her beloved Darwin home and relocate to Victoria. While living in the NT capital, she was diagnosed with lipoedema, but struggled to find a medical specialist who understood or could treat the disease. Ms. Kinnersley has stage 3 lipoedema, a chronic hereditary medical condition affecting 11% of people assigned female at birth, causing an abnormal build-up of fatty tissues around the arms, hips, and legs, and potentially leading to immobility.
Advocates say the condition is relatively unknown across Australia due to a lack of research, which sees those diagnosed with it spend thousands of dollars on treatments and therapeutics in hopes of maintaining their mobility. The lack of services is 'disheartening' for women across the country, according to Jen Bartlett, director of Lipoedema Australia. More research funding for the condition would lead to a greater understanding of its prevalence in the community.
Long-term Darwin resident Leah Potter, who has stage 4 lipoedema, believes this lack of specialist services is forcing people to battle the condition in isolation. Most people with the condition live in pain and shame, which compounds other underlying health issues. People in Darwin with lipoedema often rely on telehealth, which can be very expensive, and the humid climate poses additional challenges. The absence of formal and informal support groups is a significant issue.
Research funding is critical for Lipoedema Australia to submit an application for support from Medicare. More research into the condition would help the charity submit an application for support from Medicare. Although some people with lipoedema can access the compression garment scheme, people with the condition need more support. Medicare coverage for things like lymphatic drainage and compression therapy in every state, as well as access to private health insurance to cover hospital stays, would be really important.
Melbourne-based plastic surgeon Ramin Shayan, who specializes in reconstructive treatments, wants to see more education for medical professionals. Dismissing patients' concerns could worsen their psychological distress. He believes that lipoedema is a real pathological disease that's very harmful, and not something that people are being told they're guilty of being lazy or gluttonous for.
Back in regional Victoria, Ms. Kinnersley is spending between $100 and $140 for her weekly treatments. Both Dr. Shayan and Ms. Kinnersley urge people who suspect they have lipoedema to seek early diagnosis and treatment, which could save them pain and money in later years. To afford the surgeries she will need in the future, Ms. Kinnersley is being forced to dip into her retirement fund, which will leave her reliant on her family, health, and welfare systems.
