I am a 47 year old Aussie and I have endured thirty years of lipoedema & secondary lymphoedema, but was only diagnosed in 2009 by a physiotherapist after decades of ignorance from the Australian medical community.
The last five years saw my condition deteriorate where I was practically bedridden, unable to walk without support most days due to swelling and constant chronic pain, with barely any recognition from GPs and no appropriately trained cosmetic surgeons in Australia willing to consult with me beyond first appointment.
All of these physicians were either uninterested or untrained – I’ve lost count of the times I’ve had to write down lipoedema for them because they have never heard of it or assume I am mispronouncing lymphoedema.
There are many cosmetic surgeons in Australia – their chief objective seems to be exploiting perfectly healthy insecure women for obscene profit whilst neglecting their most basic of oaths – that of a doctor to heal sick people regardless of their bank balance. It is no coincidence that the male-dominated GP & surgical community are wilfully ignorant about a condition that is devastating for one in ten women – you can’t cure it with medication, so no kickbacks to be made from Big Pharma political lobbyists and – it’s only women.
Lipoedema is triggered by genetics, hormonal events like puberty, pregnancy, childbirth & sometimes grief or trauma. If it was 1 in 10 men it would have been cured back in the 1930s when it was first identified.
Lipoedema is a condition unable to be controlled by diet or exercise – go gluten free and totes Paleo as much as you want, you’ll still be unable to get up from the wooden hipster slatted bench in Carlton without crying out in pain from the sensations in your thighs and arse – and you’ll still be wearing the impressions of those boards when you go to bed that night.
Dress in your finest Lorna Jane (good luck finding anything below the waist that fits, including shoes that will lace up) and quote Michelle Bridges about BMI and calories in, calories out all you like, it won’t make a scrap of difference, you’ll just regret more money wasted on the hope that one day, with hard work and self-deprivation, you might look “normal”.
Swimming helps with pain, circulation & cardio – if you’re brave enough to wear a swimsuit as your thighs gently swing and slosh like a fat-shaming pendulum as other swimmers stare at the space where your ankles should be. Swimming feels great but it won’t burn lipoedema fat. Nothing does.
Thank Science, I found a specialist in the UK, Ms Anne Dancey of Birmingham, who has restored my quality of life. Ms Dancey has removed 36 kilos of lipoedema fat & fluid from my legs, over three ops spaced out over ten months.
I can now go on family walks with our dogs for miles, hold my 6yo daughter in my lap for a story without experiencing pain from the pressure of her weight on the painful fat and buy clothes and shoes off the rack instead of feeling like (and being treated as) an unsightly freak.
I can also return to the workforce.
I have had to self-fund these ops – I’m very grateful I am in a position to do so – but if it was up to Greg Hunt, Australia’s Federal Minister for Health, I would still be bedridden with a condition unacknowledged as a disability that yet prevented me from working or living a normal life.
I was expected to be in a wheelchair by the time I was 50 at the rate my lipoedema was advancing. Family tree research shows a gt gt grandmother’s obituary disclosed the last two decades of her life was spent as a bedridden invalid suffering from “rheumatic gout” who nevertheless maintained a cheerful disposition and comfort from her Bible.
Access to the corrective surgery techniques to restore quality of life to Australian women must become covered by Medicare and Australia must train more surgeons, GPs, medical staff, physiotherapists to become aware and offer appropriate treatment.
Greg Hunt’s twitter handle is @GregHuntMP. (So far any tweets or approaches by myself as a lipoedema sufferer toward the Australian Medical Association have remained unacknowledged.)
As Minister for Health and Sport, I’m sure Greg Hunt would be rapt to take this opportunity to address a serious condition and disability that affects 10% of women voters. His electoral office contact details are: Postal address PO Box 274 Hastings, VIC, 3915 Telephone: (03) 5979 3188 Fax: (03) 5979 3034. His Parliamentary Contact details are Parliament Office PO Box 6022 House of Representatives Parliament House Canberra ACT 2600 Telephone: (02) 6277 7220 Fax: (02) N/A
Please, everyone, lobby all the goverment reps you know from local through to Federal, to raise awareness of lipoedema, the cruel effect it has on sufferers physically, emotionally and economically and to find financial and medical support for those who can’t afford to self-fund corrective surgery.
I would rather still be living in Australia with my extended family, living a healthy and productive life, paying taxes and being part of the local community where I was raised – instead the complete lack of support and accessibility to Health Services meant myself – and my money – went overseas to regain my health.
I’m currently living in Ireland as it was more practical than attempting major operations and long haul flights back and forth from a country that didn’t offer me any hope or cure for my condition.
I may never have been a giant asset to Australia – but I’m sure Greg Hunt, the Australian Medical Association, the sufferers of lipoedema and all those who work to support them in a climate of apathy would prefer the $$$ I spent to regain my health was spent in the Australian economy, not in a private hospital in Birmingham.
It is simply bad economics to drive Australians overseas for healthcare while your own standards of medical training and facilities languish behind that of other nations, not to mention the opportunities denied to lipoedema sufferers who can’t engage in work and community.
Imagine a future where our daughters don’t have to suffer the physical and emotional limits and lost opportunities from lipoedema – and a public health service that can proudly states it budgets the tax dollars it is employed to manage in a way that not only provides corrective surgery to those taxpayers and citizens unable to self fund corrective surgery and preventative healthcare (such as lymphatic massage, orthopoedic footwear & compression garments), but is capitalising on a massive women’s health issue that will train medical community to lead research and advance the medical field.
Women are currently flying from Australia, South Africa and other nations to access corrective surgery for lipoedema in the UK, Germany & the US. There is no reason why Australia, who was once on track to be the “clever country” shouldn’t be leading the world in the field of lipoedema treatment and attracting those overseas patients to the benefit of the Australian economy whilst improving the economic opportunities and quality of life for Aussie sufferers and health providers trained to specialise.
(Bit of funding to CSIRO wouldn’t go astray either, while we’re at it).
This isn’t welfare giveaway for fatties unable to put down the Nutella jar. (Let me nip that right in the bud before you start, Miranda Devine.)
It’s an opportunity for Australian women and its healthcare “industry” that has positive outcomes for sufferers, healthcare providers and the economy.