Will lipedema remain focused on treating symptoms?

By Tatjana van der Krabben

Lipedema is poorly understood. That much we know. We gain, we hurt, we swell and deal with inflammation. That we know, too. New research sometimes allows us to catch a glimpse of what is or could be behind the veil. Best examples I know of at this point is by Szél et al (2014) Pathophysiological dilemmas of lipedema (abstract) and by Bosman et al (pending) Prospective controlled study to determine the use of ultrasound in lipoedema patients compared to obesity, which reveals distinct characteristics in our connective tissue.*

But these glimpses are rare. Extremely rare. Most papers are still about liposuction or what lipedema looks like, including overviews of traditional treatment options. I know you can never get too sure about surgical intervention and within that area of expertise much is being learned still, about treating stage 3 lipedema, differences between types of cannulas and techniques etc. Most useful. Of course.

But still… With liposuction getting most attention and being presented in the media as a cure sometimes or the only effective treatment, a situation of supply and demand is being created, where patients place their money – literally – on liposuction. It’s becoming the thing to do and the thing to want. The next step, which is already becoming apparent, is that treatment becomes about liposuction.

I would like to see it as a tool in a toolbox that, like any toolbox, contains more useful tools with room for more and new tools. New tools, less invasive hopefully, and, dare I hope, even more effective, will not be found unless there’s a supply of data. But before there’s supply, there needs to be demand. We need to voice that demand. We need to be that demand. We need to strive for more insight into causes of lipedema.

There’s still much work to be done in raising awareness. Don’t give up on learning about the cause(s) in this lifetime. Perhaps, as one of the members of Lipese Challenge (Facebook group) suggested, it could be a plan to take matters in our own hands and get new research topics on the table. Why not? Doctors tend to see those in need of diagnosis and at that point barely informed. Once that hurdle is taken and some additional reading and thinking is done, the vital questions start to sink in. Questions we usually only express among ourselves.

I don’t mean to be gloomy, but we are currently at risk to see research regarding causes being skipped altogether in favor of treating symptoms. And nothing but symptoms.  A course of action that happens to so many conditions out there. Finding the needle in the haystack may not be particularly marketable at the short term, but I for one would love to see it found. Because, if you ask me, prevention for generations to come still trumps surgery for damage control.

 

*Feel free to chime in and point out recent groundbreaking research towards causes, which I may have missed. Make my day!

THE WINTER OF OUR DISCONTENT 2014

by Maggie McCarey

1.  We still have no answers.

2.  We still have no clinical trials.

3.  We still have no specific medical care resulting from research.

I experienced the mother of all cascades this winter with no help or support from the medical community to stop it. No proactive ER team to treat me with dignity and respect as it observed my body in distress. No lipedema specialist to prescribe immediate treatment. Oh, my primary would have happily looked at my legs and then shook her head in bewilderment for $200 plus co-pay but she could not treat me. So, I was as alone again for this potentially life-threatening emergency as I was the first cascade preceding my discovery of lipedema six years ago.  Absolutely nothing has changed in all these years. No medical community advancement. None.

I was on my own from the moment the first purple skin discoloration and twinge of pain covered my back left calf.  The twinge came from a little scratch made by my puppy.  The over-reactive inflammatory response to this scratch came from an immune system on high alert. The perfect storm: a scratch;  auto-immune anemia (the kind people with lupus, rheumatoid arthritis, fibromyalgia and lipedema get); cold weather that brings about chilblains, Raynaulds Disease, and/or cold aggultinin disease (interestingly all caused by the same inflammation-producing vascular irritation of small capillaries in extremities); and my pre-disposition to store toxic chemicals and waste in my adipose cells below the waist. 

A lipedema cascade. Months of frigid temperatures triggered my immune system and, when the cold relentlessly continued,  a horrific cascade filled my lower legs almost to the knee with inflammation.  I could only watch the hot red sludge climb up from my ankles to mid-calf, down to my feet and toes, and then swell my hands. the tissue becoming harder, impacted, more painful, and more resistant to touch every day. Two weeks ago,  my fourth finger on my right hand turned red at the tip and then quickly became blazing hot to my hand.  I went to bed wondering if I would die in my sleep.

 If I had gone to a doctor or to an ER at any one of the moments I have described, I would have been lucky to get a doctor to listen to me long enough to think beyond my fat legs.   And them I would have been prescribed antibiotics that my body would also likely reject.  (Fat legs?  Growing three inches of fat below my knees in days? Fat disorder???? Paleeze.) Every bit of self-knowledge I had about cascade prevention, everything that had worked beautifully for me, small scale, failed. Everything I confidently passed onto you, was swept away this winter of discontent.

I have now stopped the cascade, or rather, re-negotiated with it on an almost daily basis.  Inflammation is at least receding from just below my knees to a hard ban at the top of my calves and half way down to the ankles which are again soft. The feeling of danger is no longer imminent but also gone forever is the feeling that I can make room for lipedema. Let it be in my life on its side of the room. This winter I learned lipedema will never ever be gone; it may be in remission, but given a “perfect storm,”  it will reek havoc on me if I let down my guard.  It could happen before you read this blog.

Ever the scientific mind, I took mental notes, and I did work my way out of the cascade, but not yet the entire effects it had on my legs.  They have drained but not enough.  I added Vitamin B 12 to my regime and folic acid thanks to some serendipitous discussion on Lipese Challenge.  I had already been seriously and for the first time looking at my auto-immune anemia which I have had consistently since 1996. Blood disease, especially leukemia is our family nemesis, and denial for me has been the best part of valor. When folic acid and Vitamin B 12 were discussed a few weeks ago, they connected immediately to the research I have been doing on my low red blood count.  I think B12 and folic acid have helped.

It interested me, too, to see how inflammation layers.  After wearing my canklets for a year (2009), invented in desperation for cascade one, my legs were no longer hard as rocks.  With the inflammation in check, they became soft and fleshy past the hip up into the buttocks.  I hadn't noticed a pattern...how the inflammation had come or left ...and I had never heard of an inflammatory cascade.  This time, I was aware that I was cascading and I observed.  The inflammation began at the top of my right calf and a skin-fold reappeared that had taken two years to diminish.  This was the exact place that I had smacked against an open dresser drawer in my 20's and forever after felt a hard patch t like extra bone.  This time the inflammation moved up from this line towards the knee and also down past the knee into my foot.  Within two days, my left leg was keeping pace with my right leg with amazing inflammatory symmetry.  I was also in a lot of pain which is why I decided not to use my canklets in this emergency. (I haven't worn them consistently for two years as I simply didn't need them).  Finally, I talked myself into trusting the one thing that had changed my legs dramatically the first time.  I put the canklets on first thing in the morning and took them off only when I was in bed for the night.  Doing this reversed the cascade almost immediately.  I hope.

In Steinbach's novel, The Winter of Our Discontent, the hero, Ethan Allen Hawley,  comes close to commiting suicide because he loses himself in his ambition to make a name for himself. No I am not suicidal, but I am depressed to look back and see how little progress we have made, not in making people aware for we have accomplished much in this arena, but in making a name for lipedema among the medical profession.  Looking back only in my own life, I think I would now be  dead if I hadn't been my own health advocate the last 6 years, and I see no change coming in that direction.

I don't know what the median age is of lipedema women sharing support with each other on forums.  I know not many are over the age of 60.  Are we a part of statistics that appears in the mortality rates of the obese, the stomach, ovarian,  and breast cancer folks, the diabetics? At your age, this may not be a concern, but at age 62, having to diagnose myself at age 56, and becoming my own medical practitioner, as well as my daughters', and my granddaughters' primary,  is my concern.  The rage I felt for all of us when I first learned about lipedema kept me inspired.  Now, after this winter and my harrowing dance with lipedema, I am simply, honestly sad for us all.

Yvonne van Stigt researches how to defeat lipedema

By Tatjana van der Krabben

October 2012 I attended a conference on lipedema. A very energetic lady delivered a lecture with a fellow researcher. I struggled to follow her on the topic of the leaky gut – then an only vaguely familiar concept to me. She got me when she mentioned low-grade inflammation related to lipedema. Bam! Yes, everyone, less than a year ago that was still news and at Lipese we were searching high and low for more information on the subject. And there was Yvonne van Stigt, not only on board with that, but also touching upon a sore point as how to fight the inflammation: with food - our enemy, our Nemesis. Van Stigt is a Paleo advocate, but a change of diet is only part of what she has to say. I recently had the honor of interviewing her on her views and plans.

Van Stigt has firsthand experience with lipedema
Yvonne van Stigt, specialized in clinical psycho neuro immunology, has an interesting history. She had, as she puts it, lipedema and started to study clinical psycho neuro immunology to help heal herself, as she couldn’t find the help she felt she needed in the traditional medical field. Unfortunately, her claim to have healed from lipedema sometimes yields adverse reactions. It is, however, not as controversial as it seems. She is currently free of symptoms. She described her legs as pain-free, no longer swollen, of a more modest size, but hardly perfect. Being symptom-free does not equal killer legs, unfortunately. I’ve met others coming pretty darn close to being free of symptoms. So her claim doesn’t offend me. More so, I find it inspirational.

Clinical psycho neuro immunology
Clinical psycho neuro immunology is described by Van Stigt as ‘system thinking’. Finding a correlation does not suffice: clinical psycho neuro immunology seeks to understand the underlying processes. When you hear her string her theories it’s like listening to someone describing domino chain reactions, one stone after the other going, coming full circle in the end.

When treating patients she lets them fill out a questionnaire first. During the initial session she observes people and goes over the questionnaire. She provides them with a set of rules regarding diet and exercise. Generally, the younger people change their habits, the faster and the better the result. In case of persisting health issues there may be (some) irreversible damage. She also says 75% can be sufficiently helped with these guidelines only. About 25 percent needs additional tests. A blood test seems like the next step, but Van Stigt isn’t necessarily keen on standard blood tests. “For instance: just because the blood has high levels of a vitamin, doesn’t mean there is no shortage on a cellular level. A blood test doesn’t tell that.” Instead, Van Stigt also uses urine tests or, when testing blood, zooms in on the red blood cell.

Thinking outside the box
Although she continuously speaks of causes for lipedema and doing something about it, she acknowledges it’s genetic. “A good genetic package would have left you with a solid foundation of muscle, naturally capable of burning fat. When you have lipedema, you lack these genetic benefits, making it challenging to burn fat.”

She doesn’t believe it’s hormones only. Like many of us already experienced, the early onset can predate puberty. Van Stigt identifies three triggers: stress, hormones and the immune system. Which one will tip you over the edge and will bring on obvious lipedema signs, is personal. Which triggers will continue to haunt you with symptoms is personal as well. This rules out a standard approach for each and all. “After the balance is gone and your poor genetic package is becoming a factor, your body reacts with a survival strategy,” explains Van Stigt. “This could be, for instance, diabetes, fibromyalgia or lipedema.” Lipedema here qualifies as a survival strategy, because the body is looking for a way to cope with the lack of balance. In case of lipedema, the body has issues disposing of toxicity. The lymph shutting down is a strategy of the body to prevent toxins from reaching vital organs via the lymph circulation, but it shutting down also hinders the disposing of the toxins. This also explains why, when reducing toxicity levels, the lymph start to function better, unlike for those with lymphedema. Technically, the lymph can do the job, provided it hasn’t gotten damaged over time.

As for treatment, Van Stigt works closely with a gynecologist who tests hormone levels. Bio-identical hormones are recommended when deficiencies turn up. To state the obvious: that would not be a deficiency of estrogen. Mostly, in case of lipedema, there’s estrogen dominance. As for the immune system – it’s often under pressure because of a poor diet. “Modern eating habits are poor eating habits by definition”, she says. Van Stigt, being a Paleo advocate, does sympathize with those dreading the transition to a different lifestyle, although she wouldn’t want it any other way for herself, knowing the consequences. “Commonly it takes 7-10 days to adjust to the changes. After that, you already start experiencing the benefits, which usually acts as a great incentive.”

Although not focusing exclusively on lipedema, it’s obvious she’s passionate when it comes to fighting this condition. She now has her heart set on a 10 day therapeutic retreat for lipedema patients coming winter. Van Stigt wants to give people all the tools and help them to learn to eat differently, safely start up with special exercise and stimulate the lymph through osteopathy, among other. She’s eager to prove that’s all it takes to get properly started with the rest of a better, more comfortable life.

I was jumping on my seat when I found out. I can’t make it on this trip, but someone out there wants to do something that could be the closest thing to a clinical trial that we currently have regarding lipedema, exercise and diet. To be continued!

Obviously, I’ve given a very brief and incomplete description of Yvonne van Stigt’s work. Her new book, which will describe her theories and findings regarding lipedema in great detail, is due mid-November in the Netherlands. An English translation will follow. I’ll keep you posted.