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.
No comments:
Post a Comment