75 years of lipedema: treatment depends on your funds

By Tatjana van der Krabben

Lipedema was discovered 75 years ago. I would like to say we’ve come a long way, but that wouldn’t be entirely true. Still few doctors doctors are informed, few doctors are informed about treatment options, few clinical trials have been conducted and the causes are unknown. Even the acknowledged conservative treatment options, like compression, manual lymphatic drainage, connective tissue massage and liposuction are not necessarily covered.

I can’t complain myself: in the Netherlands I at least get my compression and manual lymphatic drainage covered. But the liposuction came out of pocket. The gym at the local physical therapist’s practice, where I prefer to train because they at least know a little bit about lipedema and plenty about adjusted, safe workout programs is also not covered. Lipedema is ‘not on the list’. Now if I got bigger I could get it through health insurance on grounds of obesity. Wouldn’t we want to prevent that?

Then there’s the recommendation to eat organic, unprocessed, fresh foods as much as possible. Gluten-free and sugar-free. Although this hasn’t been researched, it has gained support over time and based on personal experience no argument here on the scientific evidence part. But that sort of food is more costly and often requires additional travel to farms or larger towns to even get it. That’s more cost. The same applies to the various supplements, either generally recommended or based on blood tests. Even when found through bloodwork this doesn’t necessarily imply the needed supplements are covered.

Thankfully I was able to come up with the money to exercise at the preferred place, can get a lot of organic produce, in part because of my in-laws’ vegetable patch where they never ever spray. I also got liposuction when I felt I needed it. My nest egg was gone, but at least I got to have the treatment. I benefitted. I need less of the covered care. Some sweet deal for my health insurance. I can work more and disability is not an issue for years to come - you’re welcome, government.

But what if you don’t have the sort of income to make that happen or a nest egg? What if you have been muddling through life with this unrecognized ‘thing’ that got your clothes size to go up and your energy levels to go down? You cut back on your work hours or changed jobs to match your energy levels. Your income decreased along the way.

So what did 75 years of ‘knowledge’ about lipedema get us? If you can pay for it, you can advance your health. Of course there are some low budget things you can do and once you figure out a safe workout routine you could do it from home, at the park or at a more affordable gym. Maybe you could grow some veg yourself? Let’s face it: liposuction doesn’t cure lipedema, but it sure is the fastest way to get a lot of improvement. But there’s no clever DIY alternative to liposuction. Saving up for liposuction sadly is an illusion for many. So now we see more and more attempts at crowdfunding to make liposuction possible.

Our valued fellow blogger Christina Routon is facing the same challenge. She has worked on her diet, her workout regime and works on reducing stress. Her body however, is not playing nice and is telling her she needs to take another step if she wants to see any more improvement. She has also started a crowdfunding page to work towards liposuction, but it’s hard. I see many similar requests on social media, which also implies a weird type of ‘competition’. The fact it has come to this saddens me. We need medical coverage and affordable care for lipedema. And we need it bad.

Christina is a hard worker with a creative soul and a big heart. I hope she makes it.

More information about Christina’s crowdfunding efforts:
http://www.gofundme.com/lipedema-surgery
http://creativelifeenterprises.com/fight-lipedema-t-shirt-campaign/

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!

Liposuction – short term or long term fix?

By Tatjana van der Krabben

Liposuction is not a cure for lipedema. Been there, done that. Buuuuut….how long will you be able to enjoy the benefits? Snaky question, which I don’t have an answer to. All I know is, that it could be much shorter than anticipated.

I’ve blogged about the fat sometimes returning fairly soon in individuals. This week an article from The New York Times from May 8, 2011 was brought under my attention again. It’s disturbing: in a year fat was regained. Be it elsewhere, but fat was regained. Oops. I also stubbornly insist you CAN regain at the locations where the fat was sucked away. You can. Many have.

Where does that sit with the (few) long term studies on liposuction in case of lipedema? Quite well, actually. It’s a story of give and take. A case of “yes, but”. The body appears to be fond of storing. In lipedema we took this to the next level. And some, if you look at patients in stage 3. With liposuction we “steal” fat from our body and the little hoarder that she is will work overtime to “fix” that. Bring on the inflammation. We’ll get you gaining at under 1000 cal. a day. Ha!  

Yes, but. Thankfully there’s a “but” in this. You can counteract inflammation. You can attempt to crack the code to your body and figure out an eating and exercise plan that works well for you. Balance the stress, tweak some here, tweak some there. More and more of us manage to trick our bodies out of hoarding. At least between hormonal highs and lows. When the hormones shuffle, we are, alas, riding shotgun. Screaming “stop!”, praying the hormones will listen and hit the brakes.

The cases in my mind, where fat came back at a cruel pace involved women who were close to hormonal changes or didn’t change their lifestyle. And perhaps it also is of importance how much is removed. It has been implied – not researched – that, in order to tip the scales and change the balance properly for the patient, a significant amount of fat needs to be extracted. I wouldn’t be surprised, although clueless how to define “enough” and “too little”. (Can I make another request for research? Put it on the list, please.)

So, when considering liposuction, it doesn’t hurt to ask yourself if it would still be worth it for you personally if you could only enjoy the new optimum for, say, 5 years. It can be. Like with me. My kids are small NOW. I wanted the extra energy to start a new career NOW. I have this new window of opportunity that I obviously want to last and last. Every year in my present state counts. I make it count. It will be disappointing when I get pushed over to the passenger seat and watch the hormones take hold for a while again, but that’s the risk. I was willing to take it.

I bring this up, because for you it could also be worth it, but you need to know to take a proper decision. Maybe you’ll decide to wait, until after you have a family. Or not. Maybe you secretly hoped lifestyle would be less of an issue after liposuction. Sorry, no. Essentially you’re buying time. Make it count.

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.

 

Love and Relationship with Lipedema

by Scott Routon as told to Christina Routon

I met Christina in third grade. She'd moved to my small town in Georgia after her father separated from the military. I was fascinated first by her hazel eyes and by the fact that she was wearing a skirt when most other girls in school wore jeans every day.

We became best friends, and on Valentine's Day in third grade Christina asked me to marry her, and I said yes.

We had some growing up to do, of course, and as time went by and I switched schools we saw less of each other. Then one day this beautiful young woman stopped her car and asked if I needed a ride. We spent the afternoon together and ended up dating for the next two years before getting married in 1990. I was 19, Christina was 18.

There was a sexy librarian-sharpness about her that intrigued me. She's one of the smartest people I know. There was something I found fascinating about her, I can't put it in words. We did have our differences and our issues, though, and while I was in the military and away from home I sent her a break-up letter. I had second thoughts, though, and called her. I couldn't imagine being without her, and I didn't want her to be with someone else, and this time I asked her to marry me.

When I saw Christina on our wedding day, she took my breath away. She was beautiful. When we did the garter toss, I did notice she'd only put the garter up to just under her knee. I didn't know why. I knew Christina had been complaining about her weight and her legs, but I didn't see anything wrong with her. I love curvy women, and I liked seeing her in dresses, skirts, shiny hose and heels. I didn't see anything wrong with her legs. They were just part of her.

Over time, I did notice Christina was gaining weight and some of the clothes she wore didn't seem to fit as well as they used to. We didn't know anything about lipedema at that time. When Christina gained weight when pregnant with our son, that's when I noticed a change in her legs. I was concerned, and I still thought she was beautiful, but we both figured that after the baby was born she would lose the weight and she'd look the way she did before. She's always had a pear-shaped, hourglass figure that I love, and I did want her to get that back.

When we moved to Alabama and Christina joined the gym, I'd never known anyone to work harder. She was going to the gym almost every day, running on the treadmill, lifting in the weight room. She and those other ladies kicked my butt in the spin class! I couldn't keep up, and that blew my masculinity to pieces. But we were both concerned when she continued working out and cutting out junk food and yet only lost thirty pounds during those two years. That was when we started to suspect something else was going on.

I'll never forget when the jerk online said something about her legs. She'd been posting on a well-known bodybuilding forum and had asked for advice about her program. Christina was discouraged because her legs weren't changing no matter what she was doing. This jerk came on the board and replied to her post, basically calling her a liar about her workout and diet and saying horrible things about a picture she'd posted on her profile page. This was one of those times I wanted to hunt someone down and hurt them they way they'd hurt my wife. She cried for a long time and came very close to giving up everything she'd worked so hard for.

This was also the event that made her want to seek out more information. She'd struggled for so many years with her weight and her legs. The way her legs looked was so tied to her self-image that it did affect our relationship and our intimacy. I've always believed she was beautiful and shapely. It didn't matter that I told her she was beautiful and I loved her shape and yes, even her legs. I hated that she didn't wear skirts or dresses anymore and wanted to hide her body from me. When she talked about seeing an endocrinologist to find out what else may be going on I supported her decision.

When Christina started taking medication and she finally started losing weight, we both had hope. I wanted her to wear dresses again. I wanted to get her a pair of boots to wear with a skirt and tights. But when her legs didn't change that much, the doctor said lymphadema. Christina, ever the researcher, began to search for answers and that led us to lipedema.

Everything she found said no cure, no treatment. I was furious, I was upset. It was unfair. It's hard to explain how crushed I was. I felt I'd never get the Christina I'd known back. I still loved her very much, but it was hard. And she'd been working so hard to lose weight and I wanted her to look the way she felt.

For Christina, it had a name and that was a relief. But I need an enemy I can fight. This was something I couldn't conquer. It was hard to accept, and I needed hope. I needed to hear something, anything, besides to accept it and get through it with God's grace. I needed to hear God can and will heal, that's there's medical treatment, something.

When Christina started the wrapping therapy, it was hard for me to see Christina go through it day in and day out, but it made me feel proactive. I felt like we were doing something and that felt good, it gave me hope, and I could let some of this anger out.

I'm still angry that there's no medical treatment or a lot of research in the United States for this. I also hate that a lot of plastic surgeons don't know about this or if they do, many won't touch it because of possible physical complications. I hate that many doctors don't know about this and continue to hurt and discriminate against women who have this disorder.

I completely support liposuction as a treatment for this, and if Christina and I have to go to Germany to have it done then that's what we'll do. Until then, we'll continue to learn as much as we can, continue to experiment with diet and exercise, and even if I have to have a pair of boots custom made, I will see Christina in a skirt and boots one day.

I ALMOST FELL OFF MY CHAIR: or, THE MARINE’S HAVE LANDED

By Maggie McCarey

I Googled “lipedema” this week and a few entries down from  #1 Wikipedia was a site for sore eyes.  It was a bonified United States government document on lipedema.  Do you know what this means, Phineaus T.? It means that lipedema has made it to the big top: the National Center for Biotechnology Information at the Department of US National Library of Medicine at the National Institutes of Health.  The document is an article titled Lipedema: a Rare Disease by Bae Wook Shin, M.D., Young-Joo Sim, M.D., Ho Joong Jeong, M.D., and Ghi Chan Kim, M.D, researchers from Korea.  They followed the medical intervention of a 60 year old Korean woman who had shown intermittent symptoms for ten years and then, the last three years before treatment, seemingly unstoppable swelling of the legs, and ultimate diagnosis of lipedema.

        

Dr Shin, et al. made some unprecedented statements about lipedema.  I will try to summarize their findings. [Note that I have quoted much directly from the article Lipedema is a Rare Disease.]

1) Success with complex decongestive therapy, pneumatic compression, and diet modification to reduce swelling in treatment of lipedema is debatable.

            

2) In examining their subject the researchers noted:

                        a. her muscle strength and sensory and muscle stretch reflexes of both the upper and lower extremities were normal

                        b. upon examination, petechiae (purple splotches) were noted in both her lower extremities and a lipoma was observed under the right knee joint. [petechiae is common among viruses carried by insects, disease, and lupus among other causes].

                        c. her greatest response to pain was along the outer thighs [which in sports medicine is called Iliotibial Band Syndrome or inflammation of the IB causing pain on the outside of the knee up the outer thigh and jabbing intermittent pain in the hip.] *I know it well.

            

3)  No abnormalities were noted upon neurological examination.

            

4) Blood tests for diseases of the thyroid gland, heart, and kidney were all normal.            

5) Three-dimensional computed tomography angiography was performed to determine whether the edema was a result of vascular lesions.

                           a. vascular lesions, including deep vein thrombosis, were not observed.                         

                           b. Technetium-99m human serum albumin lymphangiography was  conducted to assess the presence of lymphedema, but there were no abnormalities . [No lymphedema present!]

             

6) Regarding her pain, no abnormalities in the onset latencies and nerve conduction were found and there were no denervation potentials on needle electromyography. 

                            a.  doctors  suspected that her pain was due to serious edema and the increase in subcutaneous tissue rather than an abnormality of the nerve conduction velocity due to peripheral polyneuropathies .

            

7)  Complex decongestive therapy including bandaging was actively performed after the patient's tenderness on pressure was reduced. Upon symptom improvement, dietary modifications were attempted in consultation with a nutritionist in conjunction with an exercise prescription that focused on aerobic exercise.

                              a.  The treatment continued for a month.

                              b. There was no significant change in total weight over the treatment period, but the reduction in edema resulted in decreased circumference of 2.75 cm and 2.45 cm in the right and left lower extremities, respectively. 

CONCLUSIONS:

Other characteristics of lipedema include hematomas or petechiae that can easily arise from a minor shock or slight touch due to the increased fragility of the microvessels.

Serious pain on palpation is relatively common in lipedema compared to lymphedema, and it is rare to find a medical history of cellulitis.

Complex decongestive therapy cannot affect fat tissue, but can contribute to treatment by reducing interstitial  edema.

No bandages should be used until the pain subsides because, unlike lymphedema patients, those with lipedema report pain and hypersensitivity in the edema areas when complex decongestive therapy is performed.

The use of bandages after the pain disappears is helpful in reducing edema.

According to several reports, a reduction in the excessive fatty tissue in lipedema is possible if the compression stockings are worn constantly and if compression bandages are applied at night.

However, continuous treatment is critical because the edema will recur or worsen if complex decongestive therapy is stopped.

It is extremely likely that lipedema can be improved if proper treatment is applied before 35-years-of-age, but delayed management makes the prognosis of lipedema similar to that of lymphedema as the disease progresses to lipolymphedema.

     

The last interesting thing about this article is that many new researchers were named from across numerous disciplines and countries: Weisseleder and Schuchhardt in Germany;  Child, Gordon, Sharpe, Brice, Ostergaard, and Mortimer in England; Pascucci, Lynch, Rudkin, Miller, Macdonald, Sims, and Mayrovitz in America, and Szolnoky, Nagy, Kovacs, Dosa-Racz Szabo, Barsony, Balogh, Kemeny in Hungary [Hungary????**&!], all of whom have produced papers directly addressing lipedema, and all within the last few years.  If you would like read the article for yourself, go to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/

I could not be happier with the growing awareness of lipedema in the medical community. The time will come soon when our doctors will have to believe us now that even agencies of the federal government have taken up our cause.