Wednesday, August 19, 2015
Saturday, July 25, 2015
"However, when I have tried to research the condition, I've been turned off by many lipedema websites. Some pay lip service to being size-friendly but when you dig deeper, there is a whole lot of food neuroses and weight-loss rhetoric" – The Well-Rounded MamaShe was referring to websites, but truthfully you see this in support groups as well. We say you can’t diet it off and then talk about diet, recommend diet, compare diets. What is that?
You’re in or you’re out. And if you’re out, you can always conform by losing weight: this is popular belief and sadly, it doesn’t apply to reality. Not to lipedema, not to lymphedema, not to slow metabolism and…and…and… Not to mention the fact women are still largely being judged on looks. We evaluate what female role models outside the beauty industry wear or their new haircut – like that really matters or as if we would scrutinize the looks of their male counterparts like that.
This is what the dictionary has to say on the subject (source: thefreedictionary.com):
3. Something used, enjoyed, or provided regularly: subsisted on a diet of detective novels during his vacation.
‘A regulated selection of foods, as for medical reasons’. This could be us. This is how I see ‘diet’. Not some thing you deal with for a couple of weeks or months in attempt to reach some goal and leave it, but rather a lifestyle.
Manage, how? Through Lipese we get a lot of questions regarding diet and specifically what to eat to lose that dreaded lipedema fat. We always answer the same: change your diet and you won’t lose weight per se. With an underlying medical condition that affects your weight it definitely won’t be easy and perhaps it won’t happen at all. This is a disappointing message and not easy to convey, but this is where we currently are with lipedema treatment.
Is there still a point to it, then? What else would there be to ‘manage’? There’s mobility and strength. You can’t exercise and build muscle without proper nutrition. Trying to stop gaining can be a thing. Also very valid: pain management. By attempting to reduce inflammation, you could be able to reduce pain and become less prone to swelling.
Perhaps, trying, attempting, could: we’re all reaching. Preferably for the stars. But it’s far from easy. It requires getting to know your body and figuring out a diet plan that is right for YOU. For some stupid reason (venting some personal frustration here) we can’t make a list of do’s and don’ts we could ALL benefit from. Sadly, with lipedema it doesn’t work like with diabetes, where you can measure a concrete value and adjust accordingly then and there (that’s a bit simplified, of course). Yes, (contradicting) food lists do exist for lipedema, but it doesn’t work for all. Also, there is no research regarding diet or metabolism in lipedema.
Friday, June 19, 2015
In 1974 Georgio Fischer started with fat removal in Italy.
The adrenalin helps the blood vessels contract to avoid a lot of blood loss. The bicarbonate reduces the acidity, making the infusing procedure less painful/stingy. The fat holds the lidocaine, releasing is slowly, which allows for the application of high doses.
However, the body being able to break it down is also very important. This can be hindered by medication like anti-depressants and certain pain killers.
They all have their own quirks. Drs. Schift mentioned the risk of burns with UAL, although it helps loosen the fat, and the difficulty with anesthesia in WAL, the fluid being infused not prior but during the procedure and therefore not being able to put the anesthetic properties to full use and requiring additional anesthesia. Drs. Schift himself favors LAL, which he says is primarily used to burns through the connective tissue and helps the skin contract to avoid pleas and folds in the skin after liposuction.
I wouldn’t know about treating the lower arms myself. If that is possible, safely, it would be of use for many, since many do have lipedema in the arms. As for a cure? In case you’re not a regular reader of this blog: we’re open to liposuction as a treatment option (been there, done that, no regrets), but we don’t refer to it as a cure. Sadly, there is no known cure for lipedema at this point.
The other being about skin therapy and Ayurveda, more specifically a combination of endermology, Ayurvedic supplements, breathing techniques and exercise. I’m not saying it does nothing, but it described only one case of a lady who (also) had venous insufficiency and therefore had a strong edema component. The before and after pictures were great – she lost inches - but edema is easier to reduce than pure lipedema. At this point the person presenting the findings could not confirm whether or not it was (mostly) edema management and what did what in the treatment program. So, I’m giving it a mention, but am not getting into the details.
Monday, June 15, 2015
Monday, June 1, 2015
First there was a little and then there was a lot: filmed material about lipedema. The most treasured ones are those made by women with lipedema. They made it visible to the world what it is like to have lipedema. They gave lipedema awareness wings on social media. This blog features some of these initiatives.
In 2013 far, far away from the safety of a (makeshift) studio, British ladies boldy crossed London, England in a bus, holding banners, making stops along the way to tell about lipedema. Their endeavors caught on camera:
A grand operation; a multitude of activists and (liposuction) specialists were interviewed to get a very simple yet important message across: those with lipedema didn't bring this on themselves. You can't rid yourself of it with a bit of dieting and exercise. And any lack thereof didn't bring it on. Below is not the final cut. This month you can register for a free online streaming of the film.
Last year the Dutch also felt they really needed something more visual, in their own language, to share on social media and use with presentations. Although there was an obvious language barrier, the music and the images managed to convey part of the message to viewers abroad and requests came in to do an English version. This is it, freshly released:
Short, sweet and jam-packed with information: the Australian ladies did a fabulous job with an animation:
The next video was pointed out to me recently. Some have made the effort to do a (small) film all by themselves. Sometimes to illustrate why they need funds for treatment, some to raise awareness. This video is raw, personal, but also strong and professional looking.
One more from Germany. Excuse the language issue, but it's a good vlog (video blog) about lipedema and treatment options. She explains what lipedema is, conservative treatment, the point of liposuction and argues liposuction should be covered.
The message is getting out there and is getting shared. Happy June Awareness Month!
Thursday, May 28, 2015
Then there’s the recommendation to eat organic, unprocessed, fresh foods as much as possible. Gluten-free and sugar-free. Although this hasn’t been researched, it has gained support over time and based on personal experience no argument here on the scientific evidence part. But that sort of food is more costly and often requires additional travel to farms or larger towns to even get it. That’s more cost. The same applies to the various supplements, either generally recommended or based on blood tests. Even when found through bloodwork this doesn’t necessarily imply the needed supplements are covered.
Saturday, May 23, 2015
Lipedema June Awareness month is tantamount to October’s Breast Cancer Awareness 5-mile run to raise money for research. We and our families unite under one banner against a common enemy to raise awareness and funds for lipedema, an epidemic that affects millions of people worldwide. We spend endless hours together in committee, organizing and planning for the entire year. We network throughout the year and maintain a base of outside support: benefactors. We allocate the proceeds of our hard work to agencies that apply for grants made available from the monies we have collected. We have oversight over them. Our decisions each year evolve from the successes and failures of past years. Or, that is what it was meant to be: NOT the free-gifts-and-raffles after party of a game never played that it has become.