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.
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.
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.
So today was a bad day and I went to the gym anyway. I completed my usual routine. It got easier along the way. Lesson learnt...
ReplyDeleteTatjana
I do find even with general tasks, if I push through, it does get easier... However its little steps till the pain is manageable.
ReplyDeleteNola Y