Lipoedema

For years, these women say they've been dismissed and shamed for a painful disease they have little control over. Today, they're using their new-found ...

And they continue to grow to a point where it becomes debilitating," she says. "[But] they were horrific incisions. "After years of learning to love the body I'm in, I feel confident in my skin." Today, they're using their new-found knowledge to deliver a powerful message. "I see a history and the journey of what this disease has cost me: mentally, physically and financially. Despite numerous surgeries to ease the pain and keep her body mobile, Dee says she is renovating her home in preparation for the possibility of needing to use a wheelchair. Standing beside Xanthia, Dee and her daughter is a group of dedicated women from around the country, intent on raising awareness of the disease, and advocating for affordable treatment. "And, every time, I was told the only way to improve my health was to basically get off my ass and walk." In the three years since her diagnosis, Dee has spent around $50,000 to manage her pain and stay on her feet for as long as possible. Dee McKinnon has revealed her body to us to show that, for her, there's no shame in the physicality of this disease. The pain is always waiting to surface, she explains, but it is not as severe as it once was. Legs can become excruciating to the touch, partly because patients experience a type of nerve pain called allodynia and also because of an excess of lymphatic fluid.