This is Maureen. She’s raised four children, and she is single, hard-working, and leans on no one. She sells people homes and makes it look easy, while putting in late nights and working behind the scenes to get things done. She likes to dance, loves to walk along the beach and on trails in the forest, and has a kitten named Charlie. She’s strong, doesn’t complain no matter what she’s going through, and she’s a ray of sunshine to everyone. She is as non-judgmental as they come, and is a rock to many.
When I first met her five years ago, we had an instant connection, and there’s nothing I wouldn’t share with her or trust her with. She even dragged me dancing with her; it was my first time in 20 years. I was terrible, and she was awesome.
My name is Dawn, and I’d like to tell you Maureen’s story.
When she was a teenager, Maureen noticed that her body was changing: she was becoming heavier on the bottom and very slim on top. Over several years, this disproportion became more pronounced. Then her skin became increasingly very painful to the touch and would bruise easily. While this mystery condition worsened, many years of persistence with diet and exercise were ineffectual in changing her body shape. A lot of us can relate to that. However, even with her insistence that something really was outside of normal, doctor after doctor dismissed her concerns. No one took her seriously.
Decades passed and the condition continued to worsen. It became harder to get around, yet she fought hard to be active. She had swelling in her lower legs. She needed prescriptions to help control the pain.
Finally, after 26 years of multiple, intensifying symptoms and a revolving door of dismissive doctors, someone she was talking to suggested she might have a condition called lipedema. Just like that. That ultimately led to Maureen being officially diagnosed with this hereditary condition. Lipedema is a disease of adipose tissue. Lipedema is not obesity and is not caused by obesity. It means that, for some reason, her cells are different than yours; it’s like they’re damaged, mutated almost, behave differently, and they’re immune to diet and exercise. The diseased adipose cells collect abnormally and fill with water and toxins, mainly in the lower half of the body but also the arms, and do not burn off.
There is also swelling, pain, and something called microangiopathy, where the small blood vessels and blood flow are affected. If left untreated, lipedema sufferers in advanced stages face rapidly declining mobility and may eventually be unable to walk.
By the time she was diagnosed earlier this year, Maureen had reached advanced Stage 3 lipedema, the most progressed stage of the disease.
Lipedema was first discovered in 1940, but despite that, few physicians today seem to know about it or believe it. And yet some statistics I’ve read say lipedema may affect up to 11% of women… 11%! Imagine that more than one in 10 women you see on the street, at the mall, in the next desk, could all be suffering from lipedema in various stages, mostly undiagnosed. So far, worldwide, 11,000 women have been diagnosed with lipedema.
But here’s the clincher: In Canada, even though lipedema is officially recognized as the hereditary disease that it is, Ontario’s medical plan, OHIP, DOES NOT COVER ITS TREATMENT.
How can that be?
I’m not really sure. Sexism? Discrimination? Ignorance?
However, the good news is that lipedema can be treated surgically. BUT because of Maureen’s advanced stage of the disease, the surgical treatment to remove the lipedema cells is not even offered in Canada. It’s so specialized that no one here can do it. And yet she needs to have the surgery urgently, because at age 47, Maureen is at risk of hormonal changes that advance lipedema’s effects even further.
Luckily, Germany is a progressive nation in the recognition and treatment of lipedema. Maureen’s research has led her to a specialist in Cologne, Germany, Dr. Klasmeyer, one of few in the world who operates on Stage 3 lipedema.
However, there’s a problem: the surgery comes at a great cost. What will save Maureen’s legs and return her to a normal quality of life is going to cost over $100,000.
That’s right, Maureen is looking at more than $100,000 in surgeries and related costs over the next 18-24 months to remove the diseased cells and make the necessary corrections. More specifically, she requires about eight separate surgeries two to three months apart, each in the $8000 range, plus flights of approximately $3000 per trip, plus related travel costs, and hospital and hotel stays in the range of $1300-$2300 per trip. Maureen also needs a caregiver to accompany her to Germany, as the surgery renders her unable to walk for several days afterwards, and recovery comes with substantial pain, swelling, bruising and other difficulties.
Additionally, there are surgical aftercare and maintenance costs. For instance, Maureen needs manual lymphatic drainage therapy on an ongoing basis to allow her lymphatic system to work effectively, to reduce swelling and fibrosis. As lipedema cells enlarge, they affect the flow of the lymphatic system. She needs custom compression garments, mandatory after the surgeries, and has to wear for them for several YEARS. She needs prescriptions. And as an independent contractor, she has no medical plan and no way of having any formal assistance with any of these costs.
Maureen, although in my eyes quite a superstar, is really just like you and me. How does a normal person come up with $100,000?
Maureen has now undergone the first of these surgeries but was unable to afford a caregiver. But like a trouper, she braved it alone and travelled 18 hours via trains and planes, and flew back fresh from surgery, with all of her challenges.
Her next surgery is scheduled for December. As you can imagine, her work income has been and will continue to be substantially disrupted, as she has to take time off for the surgeries and to recover from them. That keeps her even further away from earning that $100,000.
It’s maddening to me that we are in Canada and her surgeries are not covered; they would be for probably any other disease. It’s deplorable that she had to go undiagnosed for 26 years only to find out that her condition is so advanced that no one in Canada can operate on her. Not so long ago there was some movement in the form of a petition to get lipedema treatment covered by medical plans in Canada, but not enough people seemed to either know about it or care.
So, through this GoFundMe that Maureen’s sister created, we are hoping to edge Maureen closer to freedom from lipedema and ease the massive debt that she is incurring. Any amount is helpful, anything at all, so that this friend, mother, sister, daughter, co-worker may bring to a close her fight against lipedema and start living a normal life. Anything to save her legs and keep Maureen dancing.
Feel free to join the Facebook group "Maureen’s Dancing Legs, fight against lipedema" for updates.
Please help if you can.