Highlights from Dutch Lipedema Day Conference – Part 2

By Tatjana van der Krabben

On May 30, 2015 I attended the 5^th 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.

Highlights from Dutch Lipedema Day Conference – Part 1

By Tatjana van der Krabben

On May 30, 2015 I attended the 5^th 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!

Lipedema conference - Part 2

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

The third lecture was by Wouter Hoelen, MSc, a therapist and one of the researchers involved in a study using ultrasonography for diagnostic purposes. With lipedema often being confused with obesity, this study focused on the question whether you can use ultrasonography to differentiate between obesity and lipedema. A nice touch: almost two years ago, at a Dutch lipedema meet, these researchers were given the opportunity to see test subjects on site. Those attending the meet had the opportunity to participate in the research if they wanted to.

Mr. Hoelen walked us through various slides, showing that you do obtain a remarkably different picture in lipedema compared to obesity. The fascia or connective tissue should reveal a layered image. The fat, as seen on an ultrasonographic scan, normally shows horizontally stacked little layers, marked by white lines. When showing a slide of a scan of lipedema tissue, the layers where fewer and not so neat. The fascia in lipedema shows less structure. The question was being raised whether that's (trapped) fluid. Another question that was raised was if this could explain lipedema pain and tenderness. The other matter being that this layered section of your fat is supposed to be flexible and mobile. This is now being hindered. For this, stretching was recommended.
In his lecture he brought up two more interesting points:

1. Despite lipedema being linked to puberty and beyond, he has observed suspicious characteristics in younger children.
2. They also found that BMI was not in sync with waist circumference in lipedema. Based on the calculated BMI you would expect a bigger waistline. (personal note: HA!)

Joyce Bosman, edema and physical therapist, explained about a new device called the indurometer. It's not on the market yet and she was among the happy few who got to test it for diagnostic purposes.

Lipedema and lymphedema cause changes in the tissue. The lymphedema skin tends to become tougher, the lipedema skin spongier. The indurometer measures to what extend the skin can be compressed to see if the skin has become either tougher or spongier.

Hopes are that the more accurately progression can be measured, the better treatment plans can be drawn up.

She truly stepped on it in this lecture, to allow for a little bit of time for a fellow board member of the foundation NLNet, Barbara Boots, to talk about the Dutch lipedema information film and show its trailer. A nice intermezzo - yes, I'm biased. This is the Trailer of the Dutch Lipedema Film with English subtitles. Note: it will only play on laptop or pc due to music rights that apply.

The fifth lecture was from three physical therapy students. The Dutch Lipedema Day Foundation had provided them with a research project as a graduation project. They set out to research appropriate exercise for lipedema and work towards a directive. It's all theory at this point, but they incorporated working on loss of strength and Graded Activity, to name but a few things.

The best part of it would be that the Dutch Lipedema Day Foundation has turned the tables. They don't only approach researchers to present their research, they also encourage research and point out where research is much needed. That brings me to their latest endeavour. Research is not only time consuming, it's costly. Everybody needs funds, few get it. The Foundation has introduced awareness bracelets and key chains at the conference to help raise funds for lipedema research. There are more lipedema events coming up in the Netherlands next month. So for starters they will be offered there.

The bracelets and key chains are grey and yellow. Grey for the large grey area regarding knowledge about lipedema. Yellow for the light, hope and progress that is being made. Not coincidentally the colors of the foundation. The text reads: Lipedema awareness and support. If you want to know more about the bracelets, please let me know in the comment section and I'll get back on that.

Lipedema conference - part 1

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

Lipedema Directive 2014

The day opened with dr. R.J. Damstra, dermatologist  and president of the Lipedema Directive 2014. The lipedema directive is the first Dutch set of guidelines for lipedema treatment, to be applied nationally. It was approved recently and is yet to be published.

It's multi disciplinary: doctors and therapists are supposed to contribute to treatment. It zooms in on functioning and limitations and encourages to look beyond the accumulated fat and also addresses, for instance, loss of strength, knee problems and foot problems. Liposuction gets a mention in this context, but strictly to enhance mobility when absolutely necessary. As dr. Damstra puts it: it's surgery and damage of the lymphatic system is realistic in surgery. Although he does acknowledge that today’s tumescent method is far, far safer than the old dry method.

It also encourages testing hormones for additional health issues: thyroid, adrenal glands, pancreas and pituitary gland. The patient’s weight is also addressed. Yes, 'weight'. After all, your weight may hinder you. This is not intended as a claim to say you can lose it all, if you only wanted to. This is about getting to be the best you can with this condition. He added the example that the population as a whole is getting bigger, which makes it an issue to each and all, including those with lipedema, to take responsability for their food intake, compared to their level of activity.

Dr. Damstra refers to lipedema as a chronic condition, much like diabetes. Something to learn to live with and monitor. He encourages a pro-active attitude and doesn't support endless sessions with therapists. He differentiates between treatment and maintenance phase, where the patient takes over and applies the tools as taught.

Dr. Damstra brought forward a couple of interesting statements throughout his lecture.

• To him lipedema is not lipedema until physical complaints beyond (some) fat accumulation occurs. So according to him, just having the pear shape doesn’t equal lipedema.
• Lipedema does not stem from a lymph vessel deviation, therefore it's not a lymphatic condition.
• Lipedema rarely occurs in Asia.
• Lipedema has not made ICD-10 recognition yet, because it's difficult to fit their criteria. For starters, naming the cause is required, which is unknown at this point.
• How come the feet are never affected? Feet barely have fat cells.
• Fat acts like a sponge and attracts water. The more fat, the more fluid you carry, but that does not make it (lipo)lymphedema per se.
  
  He also touched upon a few liposuction myths:
• There is no such thing as sucking away ‘all fat’. There will always be (some) fat staying behind, which is as it should be.
• Sucking out only bad or the wrong fat cells is not feasable. That would require screening one fat cell at a time to determine which could stay and which could be sucked.

Now, if I can nag about something: it doesn't say which diet is recommended. This is something they want to leave with the 'experts', dieticians. And we all know what most dieticians come up with: high carb, low fat. Plus, most are oblivious to lipedema. Hence the quotation marks.

I picked up something interesting regarding exercise. Dr. Damstra recommended Graded Activity (GA). GA suggests an exercise program that gradually becomes more demanding. You do the load as agreed with your therapist/coach. So you push yourself on a bad day and don't overdo it on a good day. Personally I haven’t been making progress in ages. I don’t go to the gym on a bad day and hit it hard on a good day, but this leaves me ‘only’ stable. So this is definately something I intend to apply.

Applying LPG

The second lecture was about LPG skin care using the LPG Cellu M6 KM machine. I’m naming the machine, because it was said this one was more powerful/effective than earlier models. It was tested on only 10 ladies, but it was interesting to learn a therapist thought it safe and possibly beneficial to try. 9 out of 10 reported positive effects like less pain and a less heavy sensation in the leg. The tenth lady was the only one at stage 3 and had to give up because treatments were too painful.

It was a small group and only 10 treatments, but I did want to give this a mention, because the question whether you can do this safely comes up a lot on forums. It’s a bit early, perhaps, to take a stand on that question, but it’s good to know it’s on the radar somewhere. She did warn about areas with varicose veins. She said it was best to work around it. Hopefully more tests can be done.