Oral History, Medical Research and Grassroots Participation in Finding a Cure for Lipedema

by Maggie McCarey

When we fall into lipedema hell where signs on the wall say “do not expect a solution, do not expect a cure, and do not try to escape,” we immediately need a crash course in lipedema vernacular.  Unfortunately, because the medical profession signed off on us as incurable before one clinical trial was completed (and if you don’t count individual case studies, one has yet to begin), we depend, share, and believe in a knowledge base riddled with assumptions. We do not even know what lipedema means before we join forums where the only real advice we receive comes from shared information collected via articles written by doctors synthesizing other articles that evolved also from even earlier articles. We then share this blend of experience and information orally among forum members as if it were the truth, and we pass it on as truth as well. In this way, we who have discovered lipedema perpetuate the bad medicine that keeps us from finding solutions.

     While I am not an expert in the medical field, I am a college professor who taught research and I am an expert on oral tradition, fact, inference and opinion. That women on forums learn to parrot information about lipedema without questioning its scientific basis or logical reasoning is a fact. Consequently, our forums are often unwitting promoters of a belief system based on oral tradition rather than a factual foundation upon which to build a cure. Sadly, as with all belief systems, leaders emerge to keep the fixed system up and running to the determent of visionaries who threaten change or, in our case, cures, if the leaders cannot retain control. Groupthink always creates leaders who hand pick their team members. The leaders’ job is to destabilize the creative process in order to maintain a specific belief in a closed system.  This is survival of the fittest. Conquerors win and the conquered either assimilate or are driven away.  It is the way of history. It is the way of groups. It is the way of all worthwhile struggles that aim to serve humanity with purity of motive.

     Proper medical research is very specific in its components and has nothing to do with power or entrenchment.  It is always evolving as information brings the possibility of a  hypotheses or idea to grow the science of a disease.  The logic of the medical research article also defines the necessary components of research:

As do all forms of science, medical theories have a factual as well as a logical basis. New information is presented in medical research articles. These papers have three separate arguments: the argument of the hypothesis, the argument of the experimental protocol, and the argument of the hypothesis's judgment. These arguments may be examples of the hypothetico-deductive or confirmational model of scientific interference. The logical form of these arguments is informal and inductive rather than formal and deductive. Understanding the nature of the logic of the medical research article may help avoid erroneous conclusions.

(Velanovich, L. www.ncbi.nlm.nih.gov/pubmed/8259532‎

      So far, lipedema research is a two-legged stool trying to strike a theoretical balance without a third leg - the argument of the experimental protocol (laboratory research).  Without the experimental protocol, researchers have no means of self-correcting or making progress towards a cure.  Every doctor I read, unfortunately, has looked at lipedema and hypothesized astraddle the two-legged stool of incurable. This hypothetical judgment, the third argument of medical reasoning, is reached without empirical research and has been passed from one medical generation to the next based primarily on case studies that confused and interposed Dercum’s disease (1892) and lipedema for half a century before Allen and Hines differentiated lipedema from Dercum’s disease in 1941 and that conclusion determined by one patient history.  The medical community has thus had 211 years littered with relentless misogyny to come up with something besides fat to describe lipedema. “Do not expect a solution, do not expect a cure, and do not try to escape.”

     Before we take their collective lack of interest personally I would remind you of the history of the hysterectomy.

            Vaginal hysterectomy dates back to ancient times. The procedure was performed by Soranus of Ephesus 120 years after the birth of Christ, and the many reports of its use in the middle ages were nearly always for the extirpation of an inverted uterus and the patients rarely survived. The early hysterectomies were fraught with hazard and the patients usually died of haemorrhage, peritonitis, and exhaustion. Early procedures were performed without anaesthesia with a mortality of about 70%, mainly due to sepsis from leaving a long ligature to encourage the drainage of pus. Thomas Keith from Scotland realized the danger of this practice and merely cauterized the cervical stump and allowed it to fall internally, thereby bringing the mortality down to about 8%. (C Hutton.  Hysterectomy: A Historical Perspective. www.ncbi.nlm.nih.gov/pubmed/915593300)

Truly, lipedema is in its infancy.  We are at the start of our campaign and most of us will not reach the land of itty-bitty skirts and knee high boots in this lifetime.  Our place in the history of lipedema is likely to be judged on how well we engage the medical community in our struggle, not on how well we harangue doctors to produce immediate solutions they don’t have.  Rather, this first generation will be known for its success or failure by its ability to create a sisterhood with one unified goal: a lipedema cure.  No leaders.  No followers. No ego. No names but one. YANA.

    George Milbery Gould (1848-1922) was a physician, lexicographer, and  the first president of the Association of Medical Librarians (now the Medical Library Association.  In 1903, he addressed the issue of medical discoveries. He wrote in the preface of an abstract titled Medical Discoveries by the Non-Medical:

I have been struck by the fact that the majority of great medical discoveries, truths and instruments, have not been made completely and suddenly, but have been led up to by preliminary and progressive steps, and that the layman has so often made these discoveries prior to the medical practitioner. This great medical truth is, indeed, but an illustration of the general law that all professional progress, in whatever branch of study, is somehow or other a result of stimulus from without. There is so much interest, and there are so many lessons to be drawn from such observations in medical history, that I have in late years kept minutes of this class of truths, from which I make the following selections.

                                                                (Journal of American Medical Association. 903;XL(22):1477-                                                                                                             1487. doi:10.1001/jama.1903.92490220001001)

And what example might Gould been thinking of? How about 18th-century poet, chemist and inventor Humphry Davy who was also an alcoholic and drug addict?  One day Davy found himself with a raging toothache. He sucked on a little nitrous and his tooth pain went away.  At the end of his paper Researches, Chemical and Philosophical; Chiefly Concerning Nitrous Oxide, Davy offered one line suggesting the gas could be used for painless surgeries.  At that time doctors believed that pain aided the healing process.  Forty years later, some medical researcher tried Davy’s solution and the rest was……well, you know…history.  Tally-ho

Summertime Blues

We're heading into warm weather in the United States and for those of us with Lipedema it usually means more of the same - staying bundled and hot in slacks and jeans and sleeves while everyone else - in our eyes, at least - is comfortable in shorts and cute summer dresses.

I was diagnosed with Lipedema last June, and I promised myself it would be the last summer I would be standing on the shore in jeans while the rest of my family enjoyed themselves on the lake. It would be the last summer I stayed far, far away from the swimming pool and it would be the last summer I continued to wear the same clothes and fabrics I always wore. This summer would be different.

I asked the helpful Facebook group, Lipedema Sisters USA, how they planned to stay comfortable this summer as well. Their top pick for comfortable clothes - maxi dresses.

http://thequeenbuzz.com/dee-buzz/spring-break-essentials

A maxi dress hides your legs and can be worn to work, out to dinner or to a casual summer party. I have a couple of long sleeveless dresses that I'll be pairing up with a light sweater for indoor days when the AC gets too cold. You can wear a maxi dress bare legged, but I have an issue with skin chafing, even when wearing my compression hose. A long time ago I figured out I needed something on my legs, even when wearing a long dress, so I started wearing cotton workout shorts, either thigh-length or capri-length. They keep my legs from chafing and make me more comfortable.

I don't want to wear my compression hose this summer, but I know I need to in order to keep my legs healthy and keep swelling down. But instead of my usual full set, I'm buying a pair of footless compression hose in a lower level of compression. This way I'm still using compression, I can wear sandals or go barefoot, and the hose won't be nearly as hot when I'm outside.

Another option is to pair a short summer dress with a pair of palazzo pants or capris and wear the dress as a

http://www.etsy.com/listing/124528990/anna-linen-wide-leg-white-pants

tunic top, or wear it with a pair of colored matte tights to cover your legs.

Whenever possible, wear clothes made with fabrics such as cotton, linen or silk. Nylon and polyester can help protect you from the sun, but another option is to use a product such as RIT Sun Guard to temporarily add sun protection to your cotton or linen clothes.

Swimming is a summer staple, but for many of us with Lipedema and / or lymphadema, going to a public pool in a swimsuit is like going to the dentist for a root canal. And those suits with the little skirts - they're pretty much a joke when it comes to covering our legs.

http://www.swimoutlet.com/product_p/8819.htm

Since I plan to go swimming a few times this year, I'll be buying a set of swim pants from Splashgear. These look like long sweatpants, but the fabric they're made from doesn't cling to your body - a quick shake and they straighten out - and they dry quickly. Another option is a pair of long board shorts to cover your thighs. This company can even custom make board shorts up to size 3x.

I hope all of you make the decision to get off the sidelines this summer. Do whatever you need to do in order to feel comfortable - that's what I'm doing by buying the swim pants - and take part in an activity you've enjoyed in the past or one that sounds interesting. Make the choice to LIVE your life and refuse to let Lipedema control what you do or where you go.

Stay safe, wear your sunscreen, drink plenty of water and have fun!

What are you planning to do this summer?

BMI is useless – now what?

By Tatjana van der Krabben

Body Mass Index (BMI) is a very popular method in the medical field to see if you have a healthy weight.

With the metric system, the formula for BMI is weight in kilograms divided by height in meters squared. Since height is commonly measured in centimeters, an alternate calculation formula, dividing the weight in kilograms by the height in centimeters squared, and then multiplying the result by 10,000, can be used. Formula: weight (kg) / [height (m)]²

When using English measurements, ounces (oz) and fractions must be changed to decimal values. Then, calculate BMI by dividing weight in pounds (lbs) by height in inches (in) squared and multiplying by a conversion factor of 703. Formula: weight (lb) / [height (in)]² x 703

If the math is not your cup of tea, you can also use a chart like this: http://www.nhlbi.nih.gov/guidelines/obesity/bmi_tbl.pdf

With a BMI ranging from 25-29 you’re considered overweight. 30 and beyond you’re considered obese.

The problem with BMI
The BMI method is tricky, because:

1. It assumes that in order to assess a healthy weight all you need is a person’s height and weight
2.  Those who use it generally assume any and all excess weight can be shifted to eventually obtain an acceptable BMI
3. It is assumed that your BMI is an indicator of your general health

That would be…false, false and false. Although the last one is good news.

With a BMI of 30,5 I would qualify as obese. I don’t feel obese. I can tell you that much.

BMI means very little to me. If you have lipedema or lymphedema, the scales just don’t play along. This adds some, which you can’t lose just like that and which is giving a false BMI reading.

You don’t have to just take my word for it. Those in favor of the BMI index already acknowledge when very muscular, Asian or short or very tall, the numbers may be higher or lower than reasonably expected. For children and the elderly it may also give a false impression based solely on the numbers. I’m glad that’s being recognized now; when in my teens they happily calculated your BMI and rubbed the number under your nose. The list of people the BMI should not be applied to blindly is growing.

There is more and more debate on the BMI index. Not only that it yields a false reading for a substantial part of the world’s population, but also regarding the division of the scores, defining when your health is at risk because of your weight. There is an insightful study on the BMI index by Flegal et al (2012). General conclusion: medical professionals label you at risk too soon. The overweight category was even associated with significantly lower all-cause mortality. This is the abstract of that paper: http://jama.jamanetwork.com/article.aspx?articleid=1555137

As for indication of your general health when you have lipedema: lipedema fat does NOT affect your organs. If you have a lot of lipedema fat on your body, this will be a subcutaneous mass. Some women have reported back upon gastric surgery that the surgeons observed the internal organs to be in the same condition as in a thin person. So BMI is a poor indicator of general health in case of lipedema, among other.

Some health experts ‘already’ differentiate between unhealthy belly fat and the fat that accumulates on hips and thighs. There is growing room for some nuance, but be alert when in (insurance) paperwork you’re asked about height and weight. You can bet on it they will calculate your BMI. It’s the fastest, cheapest way to get some clue on your health. Or so it is believed.

Measuring the waist
Still, it’s useful to monitor your health. Lipedema doesn’t make you immune to unhealthy weight gain. I switched to measuring my waist. Lipedema was in legs and arms, so waist seemed a good place to monitor.

A waist of over 80 cm or about 31,5 inches makes you at risk of health problems, or so it says on the pages of different heart foundations. At 88 cm or 34,5 inches you are considered at great risk.

This seemed useful enough, until I realized I was unable to shift weight from my belly. Just over the belly button it was pretty much normal and you can still see a hint of my ribs. Obese, huh? Then I read Lipedema can (eventually) creep up to lower abdominal region. Here we go again. Even that boundary is now debated, with lipedema-like tissue reported or suspected in breasts, on stomach and even on the scalp.

Now I don’t want to fight my doctor every inch of the way; I do want to monitor my general health. Who needs fatty organs and clogged up arteries? If the lipedema is truly limited to your legs, you can obviously still measure your waist.

Edmonton Obesity Staging Scale (EOSS) – A different perspective
Recently I came across something different: EOSS. It was first introduced in 2009 in this paper: ‘A proposed clinical staging system for obesity’ by Sharma and Kushner. You can find the abstract here: http://www.nature.com/ijo/journal/v33/n3/abs/ijo20092a.html

There are 5 stages:
STAGE 0: Patient has no apparent obesity-related risk factors (e.g., blood pressure, serum lipids, fasting glucose, etc. within normal range), no physical symptoms, no psychopathology, no functional limitations and/or impairment of wellbeing.
STAGE 1: Patient has obesity-related subclinical risk factor(s) (e.g., borderline hypertension, impaired fasting glucose, elevated liver enzymes, etc.), mild physical symptoms (e.g., dyspnea on moderate exertion, occasional aches and pains, fatigue, etc.), mild psychopathology, mild functional limitations and/or mild impairment of wellbeing.

STAGE 2: Patient has established obesity-related chronic disease(s) (e.g., hypertension, type 2 diabetes, sleep apnea, osteoarthritis, reflux disease, polycystic ovary syndrome, anxiety disorder, etc.), moderate limitations in activities of daily living and/or wellbeing.

STAGE 3: Patient has established end-organ damage such as myocardial infarction, heart failure, diabetic complications, incapacitating osteoarthritis, significant psychopathology, significant functional limitation(s) and/or impairment of wellbeing.

STAGE 4: Patient has severe (potentially end-stage) disability/ies from obesity-related chronic diseases, severe disabling psychopathology, severe functional limitation(s) and/or severe impairment of wellbeing.

Sharma and Kushner propose a pragmatic approach ‘to managing patients at the different stages of obesity’. This is a rather top-down type approach. Their proposed course of action per stage is the following:

For STAGE O: Identification of factors contributing to increased body weight. Counseling to prevent further weight gain through lifestyle measures including healthy eating and increased physical activity.

For STAGE 1: Investigation for other (non-weight related) contributors to risk factors. More intense lifestyle interventions, including diet and exercise to prevent further weight gain. Monitoring of risk factors and health status.

For STAGE 2: Initiation of obesity treatments including considerations of all behavioral, pharmacological and surgical treatment options. Close monitoring and management of comorbidities as indicated.

For STAGE 3: More intensive obesity treatment including consideration of all behavioral, pharmacological and surgical treatment options. Aggressive management of comorbidities as indicated.

For STAGE 4: Aggressive obesity management as deemed feasible. Palliative measures including pain management, occupational therapy and psychosocial support.

In his blog dr. Sharma mentions that this staging system is to be used together with the conventional BMI ‘cutoffs’. That's a bit disappointing after his explanation that BMI didn’t cut it and something else was needed. Still, you need a starting point when you should start evaluation to assess the correct stage. Otherwise all is pretty conventional as well: if it gets bad, start popping pills and put bariatric surgery on the table.

The good news would be that through the staging system a doctor actually should to look at you and do more tests, to see how you are actually doing and feeling. I would have to applaud Sharma and Kushner for that: it’s a great start. ‘Plus size’ is not by definition the same as ‘plus problems’. They got that right. Lipedema doesn't exactly make you a care-free, pain-free happy camper, but it certainly doesn't have to coincide with the health problems typically related to obesity.

Mirror, mirror on the wall…

By Tatjana van der Krabben

Mirror, do I see what you reflect? Probably not. Before the lipedema flared up, I was fairly thin. I could walk into a store and blindly pull out a pair of pants likely to fit me. Nowadays I have to check labels and am still in doubt. Apprehensive even, to try them on, for fear of disappointment in those brightly lit dressing rooms. I just don’t know. I look at pictures of myself, surprised of what I actually look like. Either bigger or thinner than imagined, depending on my mood or the trust I put in a certain outfit. Somehow, the dimensions of my physique won’t sink in anymore.

There are people out there either telling me or implying that I’m fat. It’s disappointing to be told you look so much better since liposuction. This emphasis on looks is so pointless. Like I can pick my built and genetic make-up. Was I unworthy before somehow? Less of a person? It’s otherwise also an uphill battle with doctors that lack understanding and want to name a number for your weight or body mass index before considering acknowledging your efforts to eat well.

This is a bad combo. Not realizing what you actually look like, where you truly stand physically, can make you a target for the weight mafia. This week I watched a personal trainer on television, coaching a person into losing an insane amount of weight in one year. Like a mantra he kept telling the viewers her weight loss was disappointing and that the scales don’t lie. Turned out the scales did lie: unlike most, she did not lose muscle tone in that insane schedule, but gained muscle tone. In another case the scales lied too: the woman had lipedema. But before a doctor came forward to explain what was going on these women were butchered, accused of cheating with their diet, not putting in enough effort with all that exercise. As if cheating with your diet two or three times can explain how you gain over a period of a couple of months where you otherwise apply their methods. Including working out many hours a week. Sure, that makes sense.

In the end in both cases a doctor stepped forward to explain why they did not meet the criteria at first glance. Care to guess how often a doctor does NOT step forward to explain your war with the scales? I was there for many years. Many of you were, too. It can become tempting to put a number from the scales on your self-worth, self-image, self-respect. There are so many lipese ladies out there with an eating disorder or having had an eating disorder in the past. It breaks my heart. Yes, anorexia too! On many of the forums a picture circulated of a woman, emaciated all over but on her legs. You can’t make the lipedema go away by endlessly reducing your calorie intake. But you can do damage to yourself trying. All the same, the scales will lie and give you a misleading number or body mass index. The scales can lie, but the mirror won’t. If your top half is all skin and bones, you are taking this too far.

The truth of the matter is, you can diet all you want, but your legs will remain lipese to an extent. An ugly truth, but does it make us less worthy? Of course not. Does is make you less attractive? No, it shouldn’t. Your appearance is so much more than your legs. If they show any respect, they will look at your face when engaging in conversation. When not so respectful, the eyes wander and they usually move south to bosom or butt. We can do without the idiots that judge us by our legs. It’s not you, it’s them.

And don’t forget to check out your assets next time you pass a mirror. Yes, I know, it’s about time I started doing that myself.

Note:
This is not an attempt to discourage you in your efforts to manage your weight, your health and your lipedema. Good results in terms of stopping weight gain, less edema, less pain and possibly losing (some) weight have been obtained by people with lipedema. From personal experience we favor a lifestyle with low carb, high protein, no sugar, no artificial sweetners and little or no chemical additives. Also often referred to as 'clean eating'.