Sunday, September 20, 2015

Raising awareness for lipedema – a tale with trolls & fat bias

By Tatjana van der Krabben

One time I was interviewed by a journalist of one the biggest women’s magazines in my country and had an awesome interview with her over the phone about my lipedema life. Despite the happy tone I thankfully requested insight prior to publication. Her draft said I had liposuction to fit into a size 10 again. I was also depicted as depressed, fearful and poorly informed about liposuction when I had my first surgery.
My heart sank. Our book Lipedema – Help Hope Healing had just been published and I had a request out for a (partial) tax refund on liposuction treatments, still to be evaluated. My actual stand: I chose liposuction to improve mobility and reduce pain. This journalist was undermining my credibility and reputation. It took filing a complaint with her superiors for her to admit she had twisted my words. In the end a revised and approved article appeared in the magazine. Feedback was positive. I was ‘lucky’.

As more and more ladies step forward to raise awareness for lipedema I also see more of the good and bad of (social) media. Raising awareness is awesome and valuable, but it doesn’t hurt to think beforehand how far you want to take this and what to do with the haters out there. Please excuse the negative undertone, but it’s better to be safe than sorry with today’s online aftermath of all things public.

Raising lipedema awareness & privacy

Lipedema is about the limbs, but your legs run all the way up to your groin/underwear. Images of our legs serve an educational purpose, but images don’t need to include your face per se. I made the decision to never post images of my entire legs, because I don’t want my exposed legs to be the first thing people see when they google me. This may sound a little shallow to some, but I also have a business to run that has nothing to do with lipedema. If it’s just about showing what lipedema looks like, anonymous images are just as functional. That said, we all know that showing a person behind a condition has a lot more impact than an image of an anonymous body part. If it’s a conscious decision to reveal your legs in the media or on social media, I applaud your bravery and your support for the cause.

It’s not just about the hint of nudity that can be involved. Lipedema has a profound impact on our lives or has had that impact at some point. You don’t have to disclose every little detail in interviews, blogs or campaigns. It’s o.k. to draw a line somewhere, a line that suits you.
Just remember: what goes online, remains online. Think about what you post or disclose and what could resurface even years down the line. Stay in control of the information about you online, best you can. That’s hard enough as it is.

Explore what you are signing up for

Are you super proud of your lipedema curves? Congratulations! You wouldn’t want to appear on a show where they’re conveying the message you should be miserable and are in desperate need of an intervention. Or vice versa.

It can be more subtle than that. Poorly produced (social) media campaigns can be equally problematic. This by undermining your credibility and/or reputation and inviting a lot of negative feedback, which can take away from your efforts to support the cause.
Despite the saying There is no bad press, implying all media attention can be used to your advantage, there is such a thing as bad press. Some media attention can be harmful, either for the cause or for you personally. So look into this beforehand and stay alert during interviews or the planning and production phase of projects. You don’t have to (fully) answer any and all questions or participate in anything you’re asked to join in on.

Request insight prior to publication

Where I figured 4 rounds of uncovered surgery to seek improvement for a painful condition was enough drama to interest readers, the journalist I once dealt with was of a different opinion. The problem started after the interview, where the journalist decided to fill in some blanks based on quotes other people had made online. I could never have guessed this during the interview. Editing, interpretation, an editor demanding a different angle in retrospect: it can all affect the item, either good or bad. So, if applicable, ask to see a written piece prior to publication.

Sometimes your hands are tied. TV, for instance is different. We’re not Julia Roberts and can make only so many demands. It’s also not always feasible. I once got a last minute call from a newspaper if I was willing to do a quick interview and headshot to fill a blank space on a health-themed page. In that case deadline issues got in the way, but for a magazine, for instance, the timeframe generally allows for it. If not offered the option, ask. 

Don’t feed the trolls

Trolls, haters, self-appointed gurus and experts: be prepared to find all of them to respond to your story once it goes public. They become particularly active at the first sign of (assumed) weakness or a(n implied) request for help. With lipedema, fueled mostly by fat bias, they will happily tell you what you’ve been doing wrong all along, or that you’re full of it and simply overeat. Arguing with these anonymous types or those so convinced they are right is pointless. They won’t change their minds. So my advice here is: don’t feed the trolls by engaging with them.

SEO - Boosting the right things online for the cause

Ignoring trolls is not just about being the bigger person. Not feeding the trolls is also about a little thing called ‘search engine optimization’. Search engines like Google, but also social media try to determine what the public wants to see. They release algorithms to do the math for them and determine what to show on social media timelines or what should be shown in what order in search results. Typical ways to add weight to an issue is to aim for a lot of responses and shared messages on the subject. When something goes ‘viral’, you hit the publicity jackpot and the message will spread across different media and social media platforms effortlessly. On a smaller scale these principles also apply. For instance, when you respond to or like a friend’s post on Facebook, it lingers a little longer in your newsfeed, giving more people the opportunity to reply.

This is where the trolls and the know-it-alls come in. When feeding the trolls by engaging in debate, you grow and enhance their platform. Their messages will only spread further and stay on top longer. They love that. They want you to respond, for them. If it’s toxic, leave it. It won’t help you or the cause you fight for. Then again, if you have a good thing going on social media, milk it! There’s also the good, of course.
So what to do with a good message and trolls responding to it? You can still show support and boost the message by responding to the message itself or replying to positive reactions to it. That way you still don’t feed the trolls. Lack of engagement will make them lose interest.

Raising awareness can be fun! I met some amazing people and made friends that way. Raising awareness is a slow process and it takes heaps of exposure, but we can do this. It just doesn’t hurt to look out for yourself in the process.

Monday, August 31, 2015

Low impact exercise – Aqua Lymphatic Therapy & Rebounding

By Tatjana van der Krabben

Recently an invitation landed in my inbox for a meeting called ‘Lipedema on the move’, specifically going into suitable exercise options with the opportunity to try these under supervision. The timing was impeccable. I had just cancelled my gym membership, because both going there and the training itself had become a bit of a burden. Draining, really, when I have zero energy to spare. Well, at least not to toss it out the window. But what then? I do want to exercise. What is safe? Where to begin? This clinic was an excellent starting point. Plus, many of my lipedema friends would be there. What more reasons do you need to go?!
Divided into small groups we tried Aqua Lymphatic Therapy (ALT) and rebounding on a mini trampoline. We had a lot of fun, which meant trouble for our instructors, but I think I managed to take in most for my and your benefit.

Aqua Lymphatic Therapy

ALT is very gentle. It doesn’t even come close to regular aquatic exercise. Like manual lymphatic drainage is a very gentle massage to get the lymph moving, so are these exercises very easy and slow-paced. Benefitting from the additional pressure of the water, we did exercises in comfortably warm water in which – most of us – could properly stand.

We started out with self-lymphatic drainage (SLD) and deep breathing to specifically aid lymphatic flow. After that we did very easy exercises to very relaxed music to enforce that easy pace. We walked in water, added alternately extending our arms and gently turned up the pace. The walking was paired with making a swimming motion one arm at the time, first palm down, then palm up. Little by little the pace went up. We strutted in the water, hands in our sides and circled the pool with small jumps.

The more energetic part we did with pool noodles. We used the noodles for stability and support while turning sideways, for instance. We also placed it between our legs to push ourselves higher in the water and make cycling motions (this is Holland people, we Dutch cycle everywhere) and after that horse-like jumps. Giggles all around!

Then the pace went down again. We made the water whirl around us with our hands, adding to the massaging effect of water and did more elaborate SLD. It’s quite impossible to explain this properly without showing it. A very sketchy impression: we massaged ourselves by stroking the skin from just beneath the buttock, up your side right to your armpit where we finished by making a scoop-like motion to pump the lymph. We repeated this twice and then started a little lower, mid upper leg, still from the back and then repeated the same procedure from the knee up, doing each stretch three times. We then massaged the back of our knees. We finished with a type of jumping jacks while pressing down on the groin area where the lymph nodes are. Then massaging the little dimple at the clavicles and deep breathing. That little dimple matters: it’s where all lymphatic massage begins and ends.
I must say, the total package got the lymph moving all right. For lack of time one side got more attention than the other. We all expressed our right side was feeling significantly lighter than our untreated left side. I was surprised the effect was this strong!


The little trampolines we used for rebounding are smooth in use because they use elastic bands for the bounce, not so much a metal coiled spring. The idea behind it is that it’s the easiest on the knees. Also important: these can support quite some weight and the elastic bands come in different strengths. The deeper the bounce (no jumping!) the bigger the effect on the lymph. This effect has recently been tested with a lymphoscintigraphy. The dye, injected between the toes, was administered twice: once prior to similar floor exercises and once more, after clearing all the residual dye from the first test by MLD, to measure again with rebounding. Judging by the path of the dye, the lymph was moving twice as fast when doing the same exercise/motions on the mini trampoline. Only one test subject, yes, but it gives you an idea.

I feared a little for my poor sense of balance, but I didn’t even need a support, just a little hand getting on and off the mini trampoline. We received instruction on the value of a nice, deep bounce, like described above, the proper posture and some basic moves. Best part: it’s not only good for you, it’s fun! I’m a sucker for exercise that is also fun. We all know that sticking with something is the hard part. The element of fun is a huge help in this.

Got a trampoline that matched my dress, uhuh!

A sturdy, quality trampoline like this is costly. I’m sold and getting one, but I’m well aware it’s not for everyone. So I was super pleased to hear NLNet, the Dutch lymphedema and lipedema foundation and the driving force behind this afternoon of exercise, will also be making YouTube clips with simple exercises you can do around the house. Accessible and safe, because the clips will be made by people with knowledge of lipedema. I will keep you posted on that development.

All in all it was a great afternoon. I met old friends and made a few new ones. For some it was the first time in years they got into a pool. It was a great idea to have this privacy and strictly be among ourselves with knowledgeable therapists. Not only that, the lymph actually started moving and I could tell the difference until well into the following day, despite driving back for over an hour after the training. I would say that this type of exercise is really worth looking into.
Do note that the primary focus of these exercises is to keep the lymph flowing and maintain body strength. This offers no promise of weight-loss. As discussed that afternoon healthy fat cells may be present in your legs, which could shrink, but there's no telling in advance whether a reduced circumference of your legs is feasible through exercise and/or a change of diet in your particular case.

Be healthy & be safe. Consult your doctor and/or therapist first if you want to make changes in your exercise regime and/or diet.

Wednesday, August 19, 2015

The Summer My Elm Trees Died

by Maggie McCarey

    In a few days, our summer’s end party will fill our garden and the street beyond with live music, dancing, and firelight. The friends of individual family members, forever friends and new friends, from every generation, will come together to celebrate this less than stellar season of fertility and abundance. This will  be the last year that my two elm trees will be with us for this celebration. They are dying. They have stretched over our garden, intertwined and misshapen, since we moved here 15 tears ago. They have protected four generations of my kin living below them. Known as Isis and Osiris in our neighborhood, they cleave, the branch of one supporting the other faithfully until  they have created a celtic love knot so intricate that no human could trace where one begins and the other ends. Their roots are visible 2 or 3 feet above ground, and twisted together like weaver’s filament, knotted and secure, stronger united against city life.

    Their roots bear the stripes and scars of living in a finite world. This is life. But, the horror of their passing needlessly now is the horror of my life, too. Watching them drop pale yellow leaves to the ground at the slightest touch of wind or breath is so reminiscent of lipedema pain at the slightest touch or bend of the leg. They are dying of Dutch Elm Disease (DED). DED was first named in 1910 when it ravaged the forests of Holland. It is estimated that a million elms have died in Britain alone, and there are only 8,000 left in the USA. “No cure.” My elms are dying this summer because there is no cure for DED. Drones have been invented, as have sophisticated weapons systems that can hit a village from a target on a screen, and a spaceship is being readied to explore the heavens for a new planet capable of sustaining human life.  But no aggressive plan is in place to save my elms from being toppled by a beetle in one season. 

     Lack of interest. That’s what the elm trees are dying of. Even the cause is known. When their immune system recognizes that their outer layer is breached, elms send out too much protective sap to protect their inner core. Beetles don’t actually do them in. Fungus rides in through the sap and gains entrance to the inner chambers: the root system.  Spaceships, manned by fungus, looking for a hospitable environment to ravage as long as it can survive before finding another host is what they are dying of.  And I am sick caused by lack of interest as well. That’s what my daughter, who drags her leg the way I did before I could no longer walk, is dying of. That’s what my granddaughter who has been on strenuous diets since third grade to save her from lipedema is dying of. And, that’s what my two great grandchildren, who are already allergic to the food that will be foisted upon them against our will, are also already dying of….and, of course, that’s what many generations of women have already died from. Lack of interest.

     There is good news. Some trees survive. Those who are invaded in late summer when dormancy protects them from starving to death can live. Not all of you will lose your mobility. Some of you will lumber and some of you will dance to the finish line.  Better news would be a systemic approach to curing DED (and lipedema). No finish line.  Best news would be  the appearance of a metaphor so illuminating that trees and women would have their rightful place in the world’s esteem.

        Yesterday was my birthday.  Instead of a new outfit on my special day, I bought a “festive”  transport mobility chair so that my family would be less encumbered by my illness at the Saratoga races among thousands of people on foot.  Ah, the fallen matriarch.  How I fight the demons to create lasting memories with my tribe. I walked so tall and covered my insecurities with a head held high, big legs and all, as long as I could walk.  Now, I face them without the comfort of illusion, others or mine.  

     My daughter, Stefanie’s legacy to the world is sheltering lost and unwanted children beneath her wing. She brought Estelle into our family last year. Estelle and I have the same  birthday so I shared mine with her.  Her first horse race was at the fence, and she won big every race! She stopped in to see me today. At one point, Estelle said, “This was the best birthday of my life.”

    I said, “It was one of my worst. It is difficult to be the one in the wheel chair. ” (Ignore my leaves falling pale and yellow around my body.)
     “Are you kidding, Grams? You just pulled yourself right up from the fence and stood for every race with the rest of us.  That’s what I will always remember about you yesterday. That’s what I am going to do, too, when I am old.”  Ha, there it was, that wonderful inevitable ray of light.  I still have value as do my elms who might be giving us clues to how we need to slow down lipedema. The circle of life trumped lipedema. I and my trees still have value and purpose regardless of our circumstances.  Next Saturday, when people celebrate summer, the elms and I will be among them, blessed in this season to have one last summer together.

     A footnote: I read this blog to my husband last night and it gave him the freedom to talk about how bothered he was by the chair at Saratoga, a conversation he would never have initiated. He said: I am so used to you being by my side, I missed you. “But,“I have figured out a solution.  The next time we go to Saratoga, I am going to ride in a wheel chair next to you.”
     I snickered. “Who is going to push you?”
     He waved my comment away. “I don’t care how it happens. We will hire someone. But that’s how it's going down.”
                   Isis and Osiris

Saturday, July 25, 2015

The thing with lipedema diets

By Tatjana van der Krabben
Recently I read a blog by The Well-Rounded Mama with a very accessible overview of lipedema symptoms. Something in her introduction resounded with me:
"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 Mama
She 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?

We are all size-conscious
Society demands we are size-conscious. We were raised to be. Our doctors insist we are, because supposedly our size defines our health. Selected role models on TV and in films and magazines rub it in. Clothes stores pick sides and stock for either the slim or the plus-size, hardly ever for both. Even when they do, they direct you to separate floors.

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.
Is talk of diet wrong?
Not all diet (talk) is bad, I think. Because although we tend to link the word ‘diet’ to ‘weight loss’, there’s more to it.
This is what the dictionary has to say on the subject (source:

diet   (dī′ĭt)

1.  The usual food and drink of a person or animal.
2.  A regulated selection of foods, as for medical reasons or cosmetic weight loss.

3.  Something used, enjoyed, or provided regularly: subsisted on a diet of detective novels during his vacation.

‘The usual food and drink of a person’. That doesn’t sound so bad. We all got to eat, and drink for that matter.
‘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.
Managing lipedema through diet
‘A regulated selection of foods, as for medical reasons’. I see lipedema diet as something like a diet for diabetes or a slow working thyroid. It’s not like you can cure diabetes by following a diet or fix that thyroid, but it does help you manage the condition.

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.

Guess what happens next? We swap…dietary theories and suggestions.
Just as long it comes from a good heart and a healthy curiosity, I personally don’t see the harm. Have you found something that works for you? Congratulations! But be aware that the key to your success is yours and doesn’t necessarily work for others. Share & care. We are all in this lipedema boat together.

Friday, June 19, 2015

Highlights from Dutch Lipedema Day Conference – Part 2

By Tatjana van der Krabben

On May 30, 2015 I attended the 5th Dutch Lipedema Day in the lovely southern part of the Netherlands. It’s impossible to cover everything I heard and learned that day. In this blog - part 2 - I will point out some interesting facts and figures I picked up that day.
We had a little bad luck: dr. Rapprich had had to cancel. Although famous for his liposuction treatments, he would have covered something entirely different: AquaCycling. He would have presented the first results of a study to include AquaCycling as part of the therapeutic concept for lipedema. I don’t know whether or not certain modifications were made to accommodate lipedema patients during the study, but this is aqua cycling. To be continued, then?
Ms. Smeets-Taubitz, a homeopath and health therapist (for lack of a better translation for ‘Heilpraktikerin’) delivered a very interesting lecture about infrared therapy. In this concept not to be mistaken for infrared sauna. Using specifically the infrared cabins of Physiotherm, lipedema patients were only exposed to temperatures between 27-37˚C (80.6-98.6˚F), therefore no higher than body temperature.

The warmth was directed at the back, to be absorbed by the bloodstream and to affect the lymph. The bloodstream is to spread the warmth over the entire body. It is to effect improved circulation, have a favorable effect on the organs, muscles, connective tissue and skin, potentially reduce pain, improve metabolism and have a favorable effect on the immune system. Afterwards either increased sweating or more frequent urination is reported, as well as weight loss by some over the course of 5 weeks.
Interesting detail was that Ms. Smeets-Taubitz referred to women sweating who were ‘normally practically unable to work up a sweat’. She had observed this more often in lipedema patients and this is something many of us have mentioned on forum, too.

Ms. Smeets-Taubitz may have only worked with a small group, but this has been applied as a therapy for lipedema patients in two German clinics already for some time.

Drs. Schift, cosmetic surgeon, went over the history of liposuction.
In 1974 Georgio Fischer started with fat removal in Italy.
In 1980 Yves Gerard Illouz and Pierre Fournier continued with fat removal in France, which drs. Schift described as still a bloody affair.

In 1987 dr. Jeffrey Klein, a dermatologist from the USA invented tumescent local anesthesia. This was a genuine breakthrough, reducing risks greatly. Dr. Klein’s Tumescent technique is still perceived as a handbook on the subject. Today’s irony being that American doctors now travel to Germany to learn the ropes.
In 1990 dr. Gerhard Sattler introduced tumescent liposuction in Germany. He perfected the technique and worked towards the extraction of larger amounts of fat. Along the way the cannulas have gotten significantly smaller as well.

With tumescent liposuction a fluid is being injected first. Tumescent fluid contains physiologic saline, lidocaine, adrenalin and bicarbonate.
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.
Infusing of this tumescent fluid is not unlimited, but related to body weight: 35-50 mg per kilogram of body weight – if I noted correctly.

Upon infiltration the skin swells and becomes pale, from the contracted blood vessels. Then you need to wait for the anesthetic to take full effect. Drs. Schift described the infiltrated and therefore tense and swollen tissue as more easy to work with, providing clear definition.  
He also tackled the debate among patients on how much was extracted and how come it varies, when they compare their cases. Well, it depends on the person and how much tumescent solution can be used safely for that person. So you honestly can’t compare notes with other patients.

Tumescent liposuction comes in many variations. Initially it was done entirely manually, but this is tiring. Then came: UAL (ultrasound-assisted liposuction), PAL (power-assisted liposuction), WAL (water-assisted liposuction) and LAL (laser-assisted liposuction), not necessarily in that order.
All methods were designed to make the procedure easier, for both the surgeon and the patients and to improve results.
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.

Drs. Schift also stated that despite large volumes are being extracted, this is, due to the subcutaneous friction, an active procedure for skin, stimulating the skin to retract. Whereas natural weight loss is more passive for the skin and will show sagging skin more readily.

And then…bring on the fireworks! Dr. Cornely, dermatologist and phlebologist, but more so known for his liposuction treatments, covered lipedema in the arms and ‘treated’ us to some graphic, but informational footage.
On forum most object to the claim that lipedema only sometimes occurs in the arms. Dr. Cornely argued 80-90% of the patients he saw have it in the arms as well. Other doctors have come up with percentages of around 30% of the patients, but he disagrees. He said the lower arms are often skipped with liposuction because of the concentration of lymph vessels in the lower arms. He, however, didn’t perceive this as a reason to not treat the lower arms and showed us footage of him doing so.

He also proposes to change the name of liposuction in lipedema to lymphologic liposculpture to take some distance from esthetic surgery, since liposuction for lipedema is not (necessarily) about esthetics.
Then there was an interesting debate on the long term effects of liposuction. Drs. Schift presented 2 cases with very good long term results, but said it was difficult to follow patients (time, cost, developing an objective standard to compare data), but that it would be useful in order to determine the long term effect. Dr. Cornely, however, spoke of ‘curing’ lipedema through liposuction, which statement was also welcomed by another liposuction doctor present.

Weeeeell, that sparked a lot debate and triggered many critical questions. Mind you – the physiotherapists present were for the better part trained in conservative treatment options. So watching liposuction of arms and fingers (!) in action was way out of the box for many, that, and the cure claim. As for the patients: we all fear false hope, don’t we?
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.
Those who attended the conference may miss 2 lectures in this overview, or three actually. Busted. One was on food/diet, by someone who admitted she had little or no specific knowledge of lipedema. Although touching upon relevant issues such as the quality of food and looking more so at nutrition and its effect on the body than calories, it was not lipedema-specific. Being flooded with (contradicting) information on this subject as it is, I thought it better to skip coverage on this one.
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.

A third lecture not covered here did not address lipedema, but body language and therefore doesn’t fit the scope of this blog. Plus, I played hooky with that one – yes, bad me.

Monday, June 15, 2015

Highlights from Dutch Lipedema Day Conference – Part 1

By Tatjana van der Krabben

On May 30, 2015 I attended the 5th Dutch Lipedema Day in the lovely southern part of the Netherlands. It’s impossible to cover everything I heard and learned that day. In this blog I will point out some interesting facts and figures I picked up that day.
The first lecture was by dr. Veraart, dermatologist at the Academic Hospital of Maastricht, the Netherlands. At lightning speed he covered some interesting facts and figures:

·         Lipedema is very uncommon in South East Asia. At the same time most cases are reported in the western world.
This I’ve heard before. Estimates about the percentage or number of women affected worldwide vary and they vary for a reason. 11% of all women across the globe most likely is NOT accurate. Careful what you quote out there.

·         There is no hard classification to describe lipedema.
75 years of lipedema as a known condition and we don’t even have that! Dr. Veraart called the number of parameters ‘limited’. In plain English that would be something like: there are only so many (known) symptoms linked to lipedema.

·         Lipedema often coincides with: venous insufficiency, flat feet, obesity and lymphatic insufficiency.

·         Other types of fat depositions do exist. Abnormal fat deposits on the legs is not necessarily lipedema.
Dr. Veraart mentioned in this context Madelung, lipodystrophy and lipoatrophica semicularis. Here’s the catch: he said sometimes abnormal fat deposits on the legs are actually from a different disorder.

·         The cause of lipedema is unknown.
This is where it got really interesting, because he did mention the latest theories. Dr. Mortimer is looking into the genetic aspects and studies families. A genetic mutation (Pit 1) has been found in a family, but in men. For this reason dr. Veraart didn’t think this was the genetic insight that would explain lipedema.

What is known is that our fat cells look irregular, all inflamed and ‘drenched with unrest’. Present theories evolve around an interaction between capillaries, fat and muscles. There’s also a theory where the endothelial cells play a central part; where they (want to) look into the growth factor of these cells and the effect of hormones.
He also speculated about a possible neurogenic effect - you’ll have to excuse me for my superficial account, but he went at lightning speed with medical terms and all. Suffice it to say that there are more in-depth theories available. Stuff that doesn’t involve nagging about calories and the effect of lymphedema protocols on lipedema patients, to name but a thing.

So, there are theories. Now for the hard part. Dr. Veraart was asked what was keeping ‘them’ from actually researching these theories. Money. That’s what keeping them. Most funds go to oncology and cardio-vascular research. He implied patient initiative would be required to get things moving.
The second lecture was by Ms. Dudek, psychologist, psychotherapist and dietician at the university of Warsaw. You may remember her questionnaire being shared on the forums? It evolved around the quality of life in women with lipedema.

For us it doesn’t serve much purpose to rehash that it’s hardly uplifting to deal with an unrecognized and painful condition, rarely diagnosed and mostly fairly late in life and difficult to control, too. However, she did have a few useful insights and points, from the patient’s perspective.
·         Lipedema affects all aspects of functioning, including avoiding treatment, thinking nothing would help anyway. Many of us pick up unhealthy eating habits in the broadest sense: overeating, or eating too little, not eating in company, eating disorders.

·         Dieting can lead to overeating.
She mentioned in this context the Minnesota experiment, an (old) semi-starvation experiment.

·         Social isolation she considers to be more harmful than poor diet and lack of exercise.

·         Which does help in coping with lipedema is psychological flexibility, which – and this interesting – can be learned to an extent.
As for coping with a new diagnosis she gave these pointers:

·         Give yourself time, time to experience that mixture of relief and grief.

·         Be curious and active.

·         Accept what you cannot change, but focus on what you can control.

·         Love yourself – behave towards yourself as if you love yourself.

·         Build a support network.

·         Ask for help.  
As for diet: work on long-term dietary changes, consider mindful eating and use a 80:20 ratio in the healthy food choices you make. Paraphrased I would say the idea behind it is to not go overboard, pick something you can stick with and work with realistic goals.

This is part 1 – more to follow!

Monday, June 1, 2015

Lipedema film fun

By Tatjana van der Krabben

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!