Pages

▼

Monday, February 29, 2016

Zebra Awareness: Rare Disease Day

Medical students are taught to "think horses, not zebras" when diagnosing
a condition. In other words, consider first the most likely condition. In people
of size, this means that weight is often blamed and other explanations ignored.
Weight bias keeps many conditions from being diagnosed in high-BMI people.
February 29th is Leap Day, otherwise known as Frederick's Birthday to music nerds everywhere (think Pirates of Penzance ─ "...A paradox, a paradox, a most ingenious paradox....").

More importantly, today is also "Rare Disease Day," a day to call for more attention and research into rare serious illnesses. The National Organization of Rare Disorders states that in order to be a rare disease, there have to be fewer than 200,000 affected individuals in the United States. As one news release states:
Of the 7,000 diseases classified as “rare,” only about 400 have an effective treatment. Research of diseases that affect a tiny percentage of the population is woefully underfunded, say advocates from the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day.
Today this blog focuses on rare illnesses in honor of Rare Disease Day, but especially those that get ignored or shrugged off simply because the sufferers are fat. Sadly, weight bias plays a significant role in the under-diagnosis of and under-attention to many conditions in high-BMI people, and rare illnesses are no exception.

To raise awareness of rare conditions impacted by weight bias, here are a few brief descriptions.

Numerically Rare 

Dercum's Disease, sometimes known as Adiposis Dolorosa or Painful Fat Disorder, is a Rare Adipose Disorder (RAD). In this condition, small fatty growths (lipomas) occur under the skin and cause significant pain, perhaps by pressing on nearby nerves. These growths usually occur mainly on the trunk, upper legs, and upper arms. Swelling and significant weight gain are common in people with Dercum's Disease. Other symptoms can include fatigue, weakness, easy bruising, headaches, stiffness, irritability, depression, and memory or concentration issues.

Madelung's Disease, also known as Multiple Symmetric Lipomatosis (MSL), is another Rare Adipose Disorder. It also involves small fatty growths (lipomas) but these occur primarily on the neck, shoulders, upper arms, and upper trunk, while the rest of the body is average-sized or even thin. Its onset is characteristically later in life, between 30-60 years. Although it is most often found in alcoholic men of Mediterranean descent, it can be found in non-alcoholic women too.

Cushing Syndrome is an endocrine disorder caused by too much cortisol. It can result from external sources (like long-term use of steroids for another medical condition) or internal sources (a benign pituitary tumor causing the adrenal glands to produce too much cortisol). It results in weight gain, a highly rounded face and upper body, and truncal fat, while the arms and legs are typically average-sized. Thin purple streaks may appear on the skin, and the skin can be very fragile. Acne, facial hair growth, irregular periods, thinning scalp hair, high blood pressure, high blood sugar, and osteoporosis are common sequelae.

Intracranial Hypertension is an extremely debilitating disorder that is more common among women of size, although it can happen in people of any size. It is caused by a build-up of pressure within the skull due to too much cerebral spinal fluid. It results in massive, unrelenting headaches. In addition, it often results in vision changes and pulsating tinnitus. It can mimic the symptoms of a brain tumor, which is why it is sometimes called Pseudotumor Cerebri, though this is considered an outdated term by many now.

Autoimmune Thyroiditis is a chronic inflammatory condition of the thyroid, also called Hashimoto's Disease, in which the body's immune system periodically attacks the thyroid. Its symptoms commonly include unexplained weight gain, intolerance to cold, hair loss, menstrual irregularities, fatigue, and dry skin. It may exist as a condition on its own but often exists in conjunction with other conditions like PCOS and lipedema. (Although NORD lists this as a rare disorder, I think it is far more common than believed.)

Ehlers-Danlos Syndrome is a "group of hereditary connective tissue disorders characterized by defects of the major structural protein in the body (collagen)." Collagen helps hold together, strengthen, and provide elasticity to body tissues. There are several sub-types, with symptoms ranging from fairly mild to severe. Many people with lipedema (see below) have Ehlers-Danlos Type III, or hypermobility. Symptoms include lax joints, chronic joint pain, frequent tendinitis, and early development of osteoarthritis. Fragile tissues, including skin and blood vessels, are also common, leading to problems such as easy bruising and poor wound healing.

Hidradenitis Suppurativa is a skin condition that commonly presents as swollen, painful skin lesions in particular areas of the body (including armpits, groin, perineum, and breasts). It can begin as blocked or infected hair follicles or sweat (apocrine) glands. A hard, boil-like abscess filled with pus forms. In severe forms, these can form clusters of lesions and significant scarring can occur.

Acanthosis Nigricans is a skin condition characterized by darkened coloration and a "velvety" texture. It usually is seen in skin fold regions, especially in the groin area, under the arms, or on the neck. It is associated with insulin resistance, so it's common in women with Polycystic Ovarian Syndrome (PCOS). Although AN is usually relatively benign, there is a more aggressive form that can be associated with tumors.


Not Numerically Rare

 There are other disorders that are commonly underdiagnosed in fat people because of weight bias. Even though these don't meet the 200,000 cases cut-off, these conditions tend to be chronically under-researched, under-funded, and under-treated, just like rare diseases.

And just like those who have rare diseases, many of these people face devastating medical problems, difficulty getting a diagnosis, difficulty finding information about their condition, and limited treatment options. Many feel very alone in facing their condition, especially when their weight is constantly blamed for their symptoms and they are continually given weight-loss prescriptions that may make things worse.

So even though the following conditions aren't truly "rare," the weight bias surrounding them means that many get treated like rare conditions do. Therefore I am including them as an addendum to my list.

 Lipedema/lipoedema is called a "Rare Adipose Disorder" too, just like Dercum's and Madelung's Diseases, even though lipedema's incidence is estimated at about 11% of the population. The National Institute of Health's Genetic and Rare Diseases Information Center website does list lipedema on its site, though with an asterik stating that lipedema is not a rare disease.

However, as we recently discussed, weight bias has impacted the diagnosis and treatment of lipedema significantly. As one study put it:
This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.
Lipedema is characterized by a symmetrical enlargement of the lower body (waist to ankles) and sometimes the arms. It is bilateral (on both sides) and typically does not involve the feet. It tends to get worse at times of hormonal changes (puberty, pregnancy, menopause, gynecological surgery) and can cause sudden unexplained weight gains that do not respond to diet and exercise. In later stages, severe lymphedema can also develop, mobility can be affected, and skin infections can occur.

Polycystic Ovarian Syndrome (PCOS) is estimated to affect about 5-10% of the population, and can greatly impact a woman's hormones, menstrual cycle, fertility, and metabolism. Other side effects can sometimes include acne, hirsutism (unwanted hair growth on the face or body), alopecia (hair loss on the head), and cysts on the ovaries. Insulin resistance is deeply entwined with most cases, so there is a strong tendency towards weight gain, as well as diabetes and high blood pressure.

PCOS has become more recognized by the medical establishment in the last few years. Even so, many women with PCOS still go undiagnosed for years, receive substandard or shaming treatment, or are only given lectures about diet and exercise instead of being offered a wider range of care options. PCOS is certainly under-researched, with most of its research focusing narrowly on fertility and menstruation rather than whole-life health implications, and its research and treatment is quite impacted by weight bias.

Closing Thoughts

These are but a few of the rare diseases that can impact high-BMI people; there undoubtedly are many more. If you have others you'd like to share, please put them in the comments section.

Of course, there are many rare diseases that deserve attention and research dollars. Sadly, weight bias means that many of the above conditions are losing out in the race for research money, and that many people of size are not being appropriately treated for these conditions.

It's time to change that.


at No comments:

Sunday, February 21, 2016

Eighth Annual Turkey Awards: Weight Bias in Lipedema Care

Image by Robert Burton, U.S. Fish and Wildlife Service
It's long past time for our annual Turkey Awards, so let's get this turkey launched! This year is our Eighth Annual Turkey Awards

The Turkey Awards are the "prizes" I hand out to highlight fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or troubling trends in the care of fat pregnant women these days.

In past years, we've talked about:
This year it's time to focus on weight bias in the treatment of lipedema (also spelled lipoedema).

The Lipedema Series

Lipedema is an adipose tissue disorder sometimes known as "painful fat syndrome" or "big leg syndrome." In lipedema, an abnormal accumulation of fat occurs in the legs and lower body (and often arms as well). It tends to worsen around times of hormonal change, as one press release notes:
ATDs [Adipose Tissue Disorders] involve growth and retention of fatty tissue, which often starts at key life shifts in the body’s metabolism, such as puberty, pregnancy or menopause. 
The fat cells in lipedema behave abnormally, growing beyond normal size, pressing onto nearby structures like the lymph system. This causes blood and lymph fluids to leak into the system, affecting joints and lymph circulation. Over time these abnormal fat cells can go from simply causing a pear-shaped body to interfering with mobility and causing secondary lymphedema (also called lipo-lymphedema). This can strongly impact the person's health and quality of life.

Many people of size, especially "morbidly obese" and "super obese" people, have lipedema and don't know it. It explains why some fat people have great difficulty losing weight, even when being very strict with diet and exercise. It also explains why lymphedema issues are more common in very high BMI women.

I ran a major series of posts on lipedema last year. Here is what we have covered so far:
Today, we talk about why this common condition (perhaps affecting up to 11% of women) is so under-diagnosed, and how the care of lipedema is impacted by weight bias in the medical community.

Lack of Medical Awareness

One of the most difficult challenges of lipedema is just getting diagnosed, let alone receiving adequate treatment. As one resource notes:
This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.
The biggest barrier to diagnosis is that most care providers do not know about lipedema. 

Care providers can't diagnose or treat something they don't know exists. But if this diagnosis has been around for 75 years, why are so many doctors still ignorant about this condition?

It's probably due to a combination of weight bias and practical barriers. Let's talk about these factors. 

Institutional and Personal Weight Bias

It has been estimated by lipedema experts that about 97% of care providers in the U.S. do not know anything about lipedema. How can that be?

One of the most critical questions is why medical schools aren't teaching about this disorder when it's been known about for 75 years.

Sure, lipedema is just one of many conditions that have been discovered in recent years, and medical schools only have so much time to cover many important conditions. That is a real issue. However, the main reason that this condition hasn't made it into most medical school curricula is underlying institutional weight bias.

Generations of doctors have been trained that obesity is always due to overeating and under-exercising, minus a few extremely rare genetic conditions. The medical world is very invested in this world view, both financially and emotionally, and is extremely resistant to even the mere suggestion of any other possibility. As one leading lipedema doctor notes:
People with fat disorders have excess fat, or fatty tissue, on their bodies that cannot be lost by lifestyle changes...It’s pretty difficult for the medical community to accept that fact.
Emotionally, many doctors simply don't want to hear about alternate explanations for obesity. Like the rest of society, they want simple, black-and-white views with easy answers that put the responsibility on the person's behavior. It's far easier to blame the victims than to question everything they've been taught to believe.

And of course, financially many doctors are deeply invested in the obesity treatment industry through connections to companies that specialize in weight-loss plans, pharmaceuticals, and surgeries. This thoroughly compromises their objectivity, consciously or unconsciously.

Some doctors have so much personal weight bias that they continue to deny that this condition exists, even when presented with research about it from prestigious medical journals. They think patients are making up a condition to hide a lack of self-discipline. They believe all our health issues are just from being fat, and that we are simply in denial or making excuses for overindulgence and laziness.

Weight bias is deeply embedded into medical culture. This is a major reason why lipedema has been so neglected as a field of study and as a diagnosis, despite its discovery many years ago. 

Weight bias in the medical field, both institutional and personal, remains one of the most significant barriers to improving the care of people with lipedema.

Practical Barriers

There are also practical barriers to more awareness of lipedema.

One major problem is that lipedema has no ICD (International Classification of Disease) diagnostic code.

If this condition has been known about for seventy-five years, why hasn't a diagnostic code been assigned in all that time?  Not having an ICD code makes it easy for biased caregivers to claim that lipedema is not a "real" condition.

The good news is that lipedema finally has been assigned a MeSH (Medical Subject Heading) search term on PubMed, and you can now search for and find studies on lipedema/lipoedema in the medical literature. In addition, the National Health Service in the U.K. and other medical groups accept it as a real condition. This indicates medical acceptance of lipedema is increasing. 

An ICD code for lipedema is under review, but it still has not been approved yet; weight bias has undoubtedly impeded this process. This is a critical issue, because without an ICD code, it is difficult for caregivers to officially diagnose the condition or to receive compensation for treating it. Insurance routinely denies treatments for people with lipedema, who must then either pay out of pocket or forgo treatment. Getting the ICD code approved is the first and most critical step towards better recognition and treatment of lipedema. 

Another practical barrier is that lipedema doesn't really fall under any particular medical subspecialty. As one recent Canadian article points out, that means that no particular group is promoting awareness of this condition, and very few are researching it or working on adequate treatment:
"No subspecialty has taken it on as something they're going to spearhead," said Dr. Adam Power, a vascular surgeon at London Health Sciences Centre, who sees patients with the condition. "There are few physicians who know about it."
Of the leading lipedema doctors in the world, some are endocrinologists, some are plastic surgeons, some are vascular surgeons, and a few are internists or dermatologists. This makes it difficult for even the lipedema specialists to collaborate, and the lack of centralized information makes it very hard for the average doctor to know how to treat lipedema or make referrals for it.

Although there is no officially-recognized subspecialty on lymphology, doctors who treat lymphedema are among the few that recognize lipedema regularly. However, only people who have developed secondary lipo-lymphedema go see these doctors. This means lipedema is usually only diagnosed in its later stages, once significant damage has been done. This results in fewer treatment options and worse outcomes for patients.

If we are ever going to improve care for people with lipedema, the medical community needs a specialty that will spearhead treatment and research on lipedema and its resulting lymph complications so that lipedema can be caught and treated earlier.

Additionally, we need a centralized, weight-neutral source of information that does not further weight-based stereotypes (see below). Some lipedema resources are in the process of being developed now, but further development is clearly needed. 

Impact On Health Care

Lipedema has a tremendous impact on a woman's health, both due to the condition itself and because of its impact on the quality of healthcare given.

As noted, many women with lipedema go undiagnosed for years. Often, lipedema is not diagnosed until it has progressed to severe levels and major complications have developed.

Yet even among care providers who know about lipedema, patients often receive inadequate or incorrect treatment, leading to complications that may have been avoidable. Even these complications themselves are often mistreated, leading to chronic health issues, disability, and sometimes even life-threatening sequelae. 

All of these situations combine to have a tremendous negative impact on the health of people with lipedema. 

Delayed Diagnosis and Underdiagnosis

As noted, many women with lipedema go for many years before their lipedema is diagnosed, and this delay in diagnosis results in more complications accruing. One German paper notes:
Because of the widespread lack of awareness of the medical condition ‘lipedema’ in the medical profession, this disease is usually first diagnosed when it has reached a very advanced stage, and sequelae have already developed: In half of cases, it is not until ten years after lipedema first develops that the diagnosis is made, and in almost a quarter of cases it is even 30 years or more! Many of the women affected have to endure a living hell until a diagnosis is finally made and they receive help.
Far too often, the diagnosis does not originate with providers because they do not know about this condition. Many women realize they have lipedema via the internet and then bring that information to their care providers, whom they must often educate about lipedema. Despite acceptance of lipedema from many medical societies, they may still be told they are just making excuses for being fat.

Although medical awareness of lipedema and lipolymphedema has increased recently, there is also pushback about this diagnosis from some in the medical community. Another German research article called the diagnosis of lipedema "trendy" and implied that it is being overdiagnosed:
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease.
A rare disease? If about 11% of women have lipedema, that is hardly a "very rare" disease.

But some researchers question this estimate of the incidence of lipedema. Because lipedema in its early stages is hard to distinguish from just a pear-shaped body, it's hard to prove whether that 11% figure is accurate or not; some cases really may just be a tendency towards gynecoid deposition of fat.

But clearly, for many people lipedema is far more than just a pear-shaped body. They also have the nodules of abnormal fat tissue under their skin, hypermobility and joint issues, muscle weakness, legs that are painful to the touch, frequent bruising, great difficulty losing weight, and problems with the lymph system. 

Whatever the true incidence is, it seems clear from looking around society that lipedema is not a "very rare" disease, and there are likely far more women going undiagnosed than a rampant overdiagnosis of the condition. Medical resistance is more a result of institutional and personal weight bias than a legitimate concern about a trendy diagnosis. 

Undertreatment of Lipedema

Even when lipedema has been diagnosed, treatment is often inadequate or inappropriate.

Many doctors receive minimal education about the lymph system. Since there is no specialty with centralized expertise in lymph issues or with lipedema, there are very few specialists or experts to consult with about possible treatments. This means that doctors sometimes conclude there is little to be done for lipedema and so prescribe virtually no action. Patients may be told that they have a progressive condition that will inevitably get worse and that there is nothing to be done to treat it, or that treatments are only needed if a severe stage develops. 

While it's true that lipedema cannot be cured at this time, there ARE legitimate treatments for lipedema, and lipedema is not always progressive and life-threatening. No one understands why some people with lipedema progress to severe stages and others do not, but adequate treatment may lessen the chances of it becoming severe or causing secondary complications. 

Unfortunately, even known effective treatments are often not used. Manual Lymph Drainage treatments, compression garments, bandaging, and pneumatic pumps are effective at reducing the severity and progression of lipedema, but frequently are under-utilized because of hassles with insurance companies. 

Compression garments may not be not covered by health insurance. This can be particularly difficult for high-BMI people because these garments often have to be custom-made, which is very expensive. Only people with substantial disposable income are able to afford them out-of-pocket, which means that the poorest people are the ones whose lipedema progresses most severely and have the most complications.

Insurance companies also rarely cover lymph-sparing tumescent liposuction, the one treatment that seems to be the most effective for lipedema. They see liposuction as always cosmetic, even though there is mounting evidence that lymph-sparing liposuction (not normal liposuction) is an effective medical treatment for lipedema, resulting in a remission from the worst of the lipedema. Yet lipedema patients must typically pay many thousands of dollars out of pocket to access it, which puts it out of reach for most. 

Although it requires tenacity, lipedema patients can sometimes win against the insurance companies and get coverage of needed treatments. You can read one woman's story of fighting the insurance company for lipedema treatments here.

However, lack of knowledge about the lymph system, about lipedema treatment, the lack of lipedema specialists, and insurance coverage hassles mean that most lipedema patients are chronically undertreated. 

Mistreatment of Lipedema

While undertreatment is the most common problem with lipedema management, mistreatment can also be a significant problem. Because care providers receive little education about lipedema, some patients are prescribed ineffective or even harmful treatments. 

As we have seen in previous posts, care providers have sometimes prescribed diuretics or traditional cosmetic liposuction out of ignorance, both of which have been shown to worsen lipedema rather than help it.

Similarly, many care providers do not realize that lipedema patients typically need lighter compression garments or may not be able to tolerate compression garments at all because of differences in pain levels between regular lymphedema and lipedema. Similarly, the shape of traditional compression garments for lymphedema patients are often inappropriate for lipedema patients:
Standard size graduated compression stockings are based on the assumption of the legs being tapered from smaller at the ankles to largest at the upper thigh area. For lipoedema or lipo lymphedema sufferers however, the legs can be shaped very differently with bulges, fat pads and indentations in varying locations along the leg. 
In such cases it is very important that strong consideration is given to the shape of the patient’s legs before determining what type of compression garment would work best for them. To be most effective, compression garments can be custom made to accommodate the individual’s irregular leg shape.
Additionally, if lipedema patients develop complications like joint problems, mobility issues, or skin infections, these are often grossly mistreated due to ignorance, bias, or lack of adequate knowledge of optimal treatments for high-BMI people.

For example, underdosing medications is a major problem for people with lipedema. Research shows that many "morbidly obese" patients with cellulitis or erysipelas skin infections are underdosed with antibiotics in the Emergency Room, even in hospitals that specialize in high-BMI patients. Many of these patients likely have untreated lipo-lymphedema (which often results in skin infections), but are given inadequate doses of medications for treating the infection. This sets them up for chronic, worsening infections because the bacteria can mutate to a less-treatable form. 

Sometimes medical maltreatment of lipedema becomes life-threatening. One website tells the story of a woman with lipedema who developed cellulitis. She went to the Emergency Room several times with reddened legs (the "red socks" look), fever, and pain. She was sent home with inadequate care three times. The fourth time, she was admitted but it was too late; the infection had spread and she had become septic. She died the next day.

Lipedema itself is not fatal, but in its severe forms it can lead to mobility issues and secondary infections which can be life-threatening. The story above demonstrates why it is so important for lipedema patients to be proactive about care and INSIST on having their needs met. It also demonstrates why it is so important for care providers to be better educated about proper treatment of people with lipedema.

Unfortunately, usually the only thing most of them focus on is weight loss.

Weight Bias in Lipedema Care

Even when care providers DO recognize lipedema as a legitimate condition and offer treatments known to be effective, weight bias still impacts care.

Even doctors who specialize in lipedema treatment still hold many biased assumptions about lipedema patients' behavior and habits. They often prescribe unproven interventions based on these biased assumptions. Some even refuse care unless patients agree to weight loss or "rigorous weight control."

These care providers mean well. They sincerely want the best for their patients, but have been so indoctrinated with stereotyped assumptions and attitudes that it is difficult for them to see their own biases and how these impact care.

Lipedema specialists must painstakingly and honestly search their own attitudes and treatment recommendations for unconscious weight bias if care for lipedema patients is to improve.

Assumptions About Habits

Before diagnosis, lipedema sufferers are usually assumed to have "eaten themselves" into complications. They are constantly told to eat less and exercise more. When food diaries are presented showing normal intake, care providers accuse patients of lying, of lying to oneself, or of drastically under-estimating their intake. Women with lipedema often spend years and years on ever-stricter diets, achieving only small amounts of weight loss or even gaining weight while dieting and exercising, all while being blamed for being "non-compliant." 

Sadly, getting a lipedema diagnosis may not help that much.

 Even care providers who know about and treat lipedema often have erroneous assumptions about patients' eating habits. One of the main treatises about lipedema says (my emphasis):
Many women describe their frustration as their condition deteriorates, often leading them to overeat and consequently gain weight. Thus it is not surprising that around half the patients end up suffering from obesity in addition to the lipedema.
Another major paper from Germany states:
Weight gain in lipedema is usually not predestined, but fundamentally determined by the general nutritional and exercise behavior. 
Here we see again the assumption that weight gain must ALWAYS be because of overeating ─ even when the patient has a condition that results in the abnormal deposition of fat. 

Many women with lipedema tell stories of a sudden gain in weight despite rigorous diet and exercise routines and no change of habits. Sudden, unexplainable weight gain is an extremely common symptom listed in the histories of countless women with lipedema, yet they are still being blamed for these gains by their lipedema care providers ─ the very people who should understand most.

The German paper cited previously that decries the diagnosis of lipedema as "trendy" goes on to contend that most fat "lipedema" patients are actually only fat, with lipo-hypertrophy (fat overgrowth) instead of real lipedema. It contends that treatment with Manual Lymph Drainage  (MLD) or other lipedema modalities is counter-productive, keeping them from the REAL business of losing weight (read bariatric surgery). The authors state:
Therapy options here are...long-term weight loss and exercise. In high-grade obesity this should be accompanied by medical and psychological support, ideally through an obesity center. Simple diets are not suitable. A long-term change of lifestyle and nutritional behavior is required. In case of morbid obesity surgical interventions such as gastric banding or gastric balloon insertion are often necessary...The physician’s prescription of MLD in this situation carries the risk of lack of action and compliance of the patient with respect to the urgently needed general measures such as weight loss and exercise.
While it's true that not all obese people have lipedema, this is another example of care providers minimizing possible medical explanations of extra weight because they are concerned it will interfere with fat people taking responsibility for their "unhealthy lifestyles" and avoiding drastic measures like bariatric surgery.

Unfortunately, many lipedema sites also promote these outdated stereotypes of fat people. One prominent source of information about lipedema on the internet states (my emphasis):
Medical management involves treating the hormonal disturbance as effectively as possible and providing nutritional guidance to avoid additional weight gain. Many of these individuals have endured years of ridicule because of their physical appearance and become recluses in their homes, further limiting their activity level. As lipedema progresses and the hypersensitivity increases, they feel less inclined to walk or exercise because of the pain. They inevitably gain more weight due to the inactivity and depression, often finding food their only comfort.
Really? Did a major medical site just promote the sweeping generalization that most people with lipedema "find food their only comfort"? Here we go again, assuming that severe presentations of the disease are simply caused by binge eating and emotional problems rather than the disease itself. 

Yes, there are some severe lipo-lymphedema cases who are house-bound emotional recluses with binge eating disorders, like those on certain highly-prejudicial TV shows. Years of dieting can develop into major eating disorders. But it's not true that this scenario applies to all ─ or even most ─ people with lipedema.  

MANY lipedema patients do not have eating disorders, many are extremely strict with their nutritional intakes, and most stay active and maintain a social life despite the challenges of lipedema.

Promoting the stereotype of the huge house-bound emotional recluse only adds to the bias that lipedema patients encounter. To see it promoted in medical resources is deeply disturbing.

Medical care providers have enough weight bias; it's time for online lipedema resources and medical texts to stop propagating such outdated and inaccurate stereotypes.

It is absolutely unconscionable that such stereotypes continue to be promoted within lipedema resources and medical texts. They need to be removed as soon as possible. 

Weight Loss and Diets as Panacea

Most caregivers who are unfamiliar with lipedema emphasize weight loss for treatment. They only see the patient's fatness, so they view the cure as dieting because they've been taught that obesity is due to poor habits. That's unfortunate but to be expected of caregivers who don't understand lipedema.

 What's far more frustrating, however, are the caregivers who specialize in lipedema and lymphedema and who still make weight loss and dietary restrictions a main focus, despite no evidence showing that such interventions are helpful. 

In some practices, such interventions are even a requirement for further care or for treatment, like in some lymphedema practices.

Many lipedema specialists say they only promote dieting so that "non-lipedemic" fat is lost. They admit that dieting is unlikely to bring much loss in the lipedemic areas, but still contend that fatness outside of the hips/legs/arms must only be due to poor lifestyle and can be easily lost.

This assumption needs to be strongly questioned.

Of course lipedema patients need to be careful of lifestyle, but doctors are wrong to assume that fat elsewhere can only be due to poor lifestyle. As lipedema progresses in severity, many patients notice fat gain in supposedly non-lipedemic areas (abdomen, waist, breasts, neck, back), even in the presence of reasonable lifestyle choices. I believe that it will eventually be shown that this too is a by-product of lipedema and associated metabolism issues. In the meantime, these doctors need to listen to lipedema patients when they say that fat in these areas does not always result from poor lifestyle choices.

Lipedema specialists routinely place patients on strict "anti-inflammatory" diets, complete with forbidden foods and "good food/bad food" messages, despite no research showing that an anti-inflammatory diet is helpful. In addition, the fat-shaming language that some lipedema resources use when giving nutritional advice is problematic. Years of dieting mean that many people with lipedema have had brushes with eating-disordered behaviors; fat-shaming language and the push for weight loss in some lipedema resources can make this worse. 

Does this mean that an anti-inflammatory dietary approach can never be suggested? No, it's possible this approach might be helpful for symptom relief but accurate information is key. Patients can be told that some women have anecdotally reported improvement on anti-inflammatory diets, but the approach should not be presented as evidence-based medicine nor the only approach to treatment. Women should be informed that such dietary approaches are experimental and it is unknown whether they are effective.

The same goes for weight loss programs or bariatric surgery. These have not been studied in the context of lipedema and we don't really know what benefits or risks they entail. Since dieting is one of the most potent predictors of weight and fat gain, it could be that continuing to promote weight loss and restrictive intake among lipedema patients is actually only making things worse instead of better. There is no evidence that weight loss results in long-term improvement among lipedema patients; doctors just assume it will. In fact, some people report worse outcomes afterwards. 

Lipedema doctors need to ditch the shame and blame model. Some tell themselves they are fat-friendly and sympathetic but too many are still stuck in the mentality that fat in the "wrong" spot can only be due to lifestyle excesses and spend far too much time pressuring people for weight loss and restrictive nutrition. Patients who decline these interventions are deemed non-compliant and shamed. Some providers even try to force compliance by withholding treatments or access to care.

Lipedema doctors would do far better to promote a Health At Every Size® approach instead. They can emphasize the importance of a healthy lifestyle but without focusing on the scale, dieting practices, or restrictive nutrition as measures of "success" or compliance with treatment.  

Refusal of Care Without Weight Loss

One of the great ethical quandaries of modern medicine is whether there should be weight limitations for healthcare services.

Too often, access to healthcare is tied to weight loss. Fat people are regularly refused knee replacement surgery, organ transplants, and sometimes even pain medications unless they lose weight, have bariatric surgery, or agree to see a weight loss specialist.

Sadly, this refusal of care often extends to lipedema patients. 

Many lymphedema treatment programs see weight loss as an integral part of treatment. Some lymphedema therapists have been known to refuse treatment to "morbidly obese" patients (many of whom have lipedema) who will not agree to weight-management programs of some sort. One program requires patients to commit to:
...maintaining a constant weight or preferably losing weight during the course of treatment...Patients 'contract' for continued care by exhibiting positive behaviors regarding weight loss, attendance at bariatric support groups, Weight Watchers®, or other beneficial practices. 
The authors make it clear that patients are strongly encouraged towards bariatric surgery and conclude:
Based on clinician observation and experience, management of the morbidly obese patient with lymphedema requires that the obesity be addressed in a frank and supportive way. Many morbidly obese patients exhibit a strong element of denial regarding the disease of obesity. Obtaining treatment for obesity is a life-or-death decision but patients often focus more on the treatment of an obesity symptom – ie, edema – than the underlying problem that will shorten their life. Treatment of lymphedema must be linked to the treatment of obesity if long-term success is to be achieved. 
This is the typical response from care providers who have a strong weight bias: 
  • They view the underlying problem as psychological, even when there is evidence of physical disease causing the increased fat
  • They promote weight loss as the main solution, even when weight loss does not usually help lipedemic fat
  • They use access to healthcare as blackmail to force people into weight loss diets or bariatric surgery
Although people with lipedema should always be encouraged to pursue healthy habits to minimize the possibility of further weight gain, weight loss should NEVER be a requirement for healthcare access, nor should patients be subjected to constant harassment if they have declined weight loss interventions.

Care providers need to recognize that unexplained weight gain is a part of the lipedema syndrome, that weight gain may have nothing to do with dietary habits, that some weight gain may be unavoidable, and that for some, weight loss efforts may actually result in worse outcomes in the long run. High-BMI people have the RIGHT to opt out of weight loss programs if they don't want them or feel they would be harmful. 

Treatment for lipedema and lipo-lymphedema should NEVER be contingent on having to agree to weight-loss treatment, bariatric surgery, or special dietary regimes.

 This is respect for basic patient autonomy, yet it's quite telling that violations of this basic right still occurs regularly in the lipedema and lymphedema field. 

Conclusion

 The most difficult challenges of lipedema involve getting diagnosed in the first place, then getting adequate health care and respectful treatment.

 Lipedema is a very real clinical entity, but sadly is nearly unknown among medical professionals in many parts of the world. European doctors have more knowledge and experience with lipedema than doctors elsewhere, but even in Europe women report difficulty in getting diagnosed.

 This means that millions of people around the world are suffering with lipedema but can't even get a diagnosis, let alone adequate treatment for it.

 Weight bias, both on an institutional and individual level, has played a strong role in this. Lipedema has been recognized as a condition for 75 years, yet we still don't have an ICD diagnosis code for it and insurance still largely does not cover its treatment. Until that happens, people with lipedema will continue to be blamed for their weight and for complications that are associated with lipedema.

 Unfortunately, even when caregivers do recognize lipedema, weight bias continues to interfere with its treatment. Some care providers mistakenly believe that there is no effective treatment and so the patient's lipedema worsens without intervention. Others order helpful treatments such as compression garments or lymph-sparing liposuction which insurance companies short-sightedly refuse to pay for.

 Weight bias continues to affect even those who specialize in treating lipedema. Many continue to make negative assumptions about the eating habits and emotional health of people with lipedema, and too many lipedema resources are filled with negative stereotypes. It is time for lipedema specialists to look honestly at their own biases and assumptions, and it is long past time for offensive and harmful stereotypes to be removed from lipedema informational sites.

 Some providers require weight loss in order to access basic treatment, despite the fact that lipedema makes weight loss extremely difficult and rebound gains are common. Lipedema patients should never be pressured into weight loss, bariatric surgery, or particular dietary approaches. These can be offered as an option, but should be not be a requirement for care. Patients always retain the right to autonomy over their medical decisions, including weight loss, surgery, or a particular nutritional approach; if they decline these interventions, they should not be penalized. 

 Nor should weight-loss interventions or special dietary approaches be presented as evidence-based treatment. No studies showing the benefit of these for lipedema patients exist at this time. Care providers need to stop promoting anti-inflammation or paleo diets as the "best" way to avoid lipedema progression; limited anecdotal evidence suggests they might help, but we don't have actual proof of that and patients deserve full disclosure that hard evidence is lacking. 

 Furthermore, true informed consent means that patients need to be presented with information on both the benefits AND the risks of a proposed treatment (i.e., weight loss). Care providers must be honest about the strong evidence that few people manage to lose to a "normal" BMI or keep the weight off for any meaningful length of time, that weight loss has its own risks, that weight loss often leads to weight cycling and greater rebound weights, and that weight cycling also has risks.  

 In conclusion, to improve conditions for people with lipedema the medical profession urgently needs to take the following steps:
  • Expedite and approve an ICD diagnostic code for lipedema
  • Require that medical schools teach about lipedema
  • Identify a medical specialty to spearhead and drive lipedema research
  • Increase funding for lipedema research, especially into potential causes of lipedema
  • Aggressively raise awareness of lipedema among general care providers 
  • Raise awareness of and increase utilization of lipedema treatment options
  • Require that insurance companies cover proven treatments for lipedema, including manual lymph drainage, compression garments, and lymph-sparing liposuction 
  • Initiate an intensive educational campaign about best-practice treatment of secondary infections like erysipelas and cellulitis in people with lipedema and lymphedema 
  • Aggressively investigate and promote awareness of proper dosing of antibiotics and other pharmaceuticals in people of size
  • Intensively promote gold-standard research into potential treatments for lipedema from both "conservative" and "alternative" models
  • Conduct long-term (not short-term) research on weight loss and anti-inflammatory or paleo nutritional approaches for lipedema
  • Continue research on whether lymph-sparing liposuction prevents or delays lipedema progression and severity
  • Eliminate weight-biased assumptions, fat-shaming language, and offensive fat stereotyping in lipedema resources
  • Question assumptions that fat in non-lipedemic areas must be due only to "lifestyle" issues
  • Eliminate biased guidelines that require weight loss or weight loss treatment in order to access medical treatments like lymphedema therapy or lymph-sparing liposuction
Lipedema patients have been underdiagnosed, undertreated, manipulated, mistreated, shamed, and blamed for too many years. It is long past time for some radical change in how lipedema patients are perceived and treated by the medical field.

Weight bias in lipedema treatment is insidious and extremely pervasive. This weight bias is a major barrier to improving care and outcomes for lipedema patients. 

 I believe that most medical professionals are good-hearted people and genuinely want to help lipedema patients, but until they unflinchingly examine the effect of both personal and institutional weight bias on medical care for people with lipedema, progress will only be modest. 


References and Resources

Resources

*Trigger Warning: Many of these sites are not fat-friendly or promote dieting behaviors
Research Articles

J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. doi: 10.1111/ddg.12024. Epub 2012 Dec 11. Thick legs - not always lipedema. Reich-Schupke S1, Altmeyer P, Stücker M. PMID: 23231593
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease....

at 1 comment:

Tuesday, February 9, 2016

Yet More Evidence That You Shouldn't Go To The Hospital Too Early

Image from Zwelling 2010 study
Here are two more studies showing that early admission in labor to the hospital is a risk factor for obstetric interventions and for a cesarean.

This is something we've written about before, but given these two latest studies, it's a point worth repeating.

Study #1

In the first study, early admission (at less than 4 cm dilation) increased the utilization of epidurals, artificial augmentation of contractions, and cesareans.

21.8% of first-time moms with early admission had a cesarean, compared with 14.5% of first-time moms with later admission.

In women who had had children before, the cesarean rate was 3.7% in those admitted early, compared with 1.9% in those admitted later.

Most interestingly, the hospital lowered their overall cesarean rate between 2012 and 2014 by admitting fewer women in early labor (10.5% to 7.9%). Take note, fellow hospitals!

Study #2

In the second study, "early" admission was defined as less than 6 cm of dilation. Note the difference in cutoffs between the two studies; this is important.

This change reflects the new recommendation that 6 cm be considered the criteria for "active labor" rather than the old cutoff of 4 cm. Indeed, a recent consensus statement from the American Congress of Obstetricians and Gynecologists and the Society for Fetal-Maternal Medicine suggests that the definition of "active" labor be changed to 6 cm. Lamaze International has highlighted this with their related discussions on "Six is the New Four." Here is one hospital that is considering the new recommendation, which is great.

This study found that women admitted at less than 6 cm had more than THREE times the risk for cesarean (13.2% vs. 3.5%).

When broken down between women who had never given birth before and those with previous births, the increased risk for cesarean with early admission only reached statistical significance in multiparous women (11.0% vs. 2.5%, or more than FOUR times the risk).

In first-time mothers, the cesarean rate was 16.8% in those admitted before 6 cm dilation, vs. 7.1% in those admitted at 6 cm or later. Clearly there was a major trend towards significance (a relative risk of 2.35), but the confidence interval crossed 1.0, which means the findings could have been due to chance. So conclusions are limited there but strongly suggest that with a larger group, statistical significance might well have been reached.

The authors concluded:
Decreasing cervical dilation at admission, particularly <6 cm, is a modifiable risk factor for cesarean, especially in multiparous women. 
In other words, here is a simple way for hospitals to help decrease their cesarean rates.

Summary

The take-home message for mothers is that if you plan to birth in the hospital, don't rush to the hospital too early in labor. 

Consider hiring a doula for labor support both at home and in the hospital. This can help decrease your chances for a cesarean and give you the confidence to not go in too early. This may be especially important for first-time mothers who have never labored before and aren't sure what to expect.

Obviously, if there is something that doesn't feel right or your intuition says needs attention, you should not hesitate to go in and ask for evaluation. And of course, sometimes there are medical considerations that might also call for early evaluation; your care provider will help you determine the situations to be cautious about.

But most of the time, there is no need to be in the hospital right away if labor has started. The sooner you go in, the more likely you are to have interventions like oxytocin augmentation and cesareans. Stay home with good labor support until labor is well-established and moving along. If you go in too early, don't be afraid to go home for a while before you return to stay, as long as both you and baby seem to be doing well.

The take-home message for hospitals is that they can lower their primary cesarean rates just by encouraging women to stay home longer in early labor, and by adopting 6 cm as the new standard for "active" labor and hospital admission for most women.

Given the known health risks of a too-high cesarean rate, this has important implications for public health.


References

Obstet Gynecol. 2016 Feb 4. [Epub ahead of print] Cervical Dilation on Admission in Term Spontaneous Labor and Maternal and Newborn Outcomes. Kauffman E1, Souter VL, Katon JG, Sitcov K. PMID: 26855106
OBJECTIVE: To examine associations between cervical dilation on admission and maternal and newborn outcomes in term spontaneous labor. METHODS: This is a retrospective cohort study of 11,368 singleton, term (37-43 6/7 weeks of gestation) spontaneously laboring women delivering in 14 hospitals in Washington State between 2012 and 2014 using chart abstracted data from the Obstetrics Clinical Outcomes Assessment Program. Women with prior cesarean delivery or ruptured membranes on admission were excluded. Pregnancy history, cervical dilation on admission, and outcomes were analyzed. Associations between early (less than 4 cm cervical dilation) and late (4 cm or greater cervical dilation) admission and outcomes were examined using general linear models with a log-link stratifying by parity. Results were reported as adjusted relative risks (RRs) with 95% confidence intervals (CIs). RESULTS: Early admission compared with late admission was associated with increased epidural use of 84.8% compared with 71.8% in nulliparous women and 66.3% compared with 53.1% in multiparous women (nulliparous RR 1.18, 95% CI 1.13-1.24; multiparous RR 1.25, 95% CI 1.18-1.32); oxytocin augmentation in 58.5% compared with 36.6% in nulliparous women and 45.9% compared with 20.7% in multiparous women (nulliparous RR 1.56, 95% CI 1.50-1.63; multiparous RR 2.14, 95% CI 1.87-2.44); and cesarean delivery of 21.8% compared with 14.5% in nulliparous women and 3.7% compared with 1.9% in multiparous women (nulliparous RR 1.50, 95% CI 1.32-1.70; multiparous women RR 1.95, 95% CI 1.47-2.57). Early admission was associated with increased neonatal intensive care unit admission for newborns of nulliparous women only (RR 1.38, 95% CI 1.01-1.89). Between 2012 and 2014, late admission increased 14.6% for nulliparous patients and 10.1% for multiparous patients, and the cesarean delivery rate decreased from 10.5% to 7.9% (P<.001) for all. CONCLUSION: Early admission (less than 4 cm cervical dilation) is a risk factor for increased medical intervention and cesarean delivery.
Am J Perinatol. 2016 Jan;33(2):188-94. doi: 10.1055/s-0035-1563711. Epub 2015 Sep 7. Optimal Admission Cervical Dilation in Spontaneously Laboring Women. Wood AM1, Frey HA2, Tuuli MG1, Caughey AB3, Odibo AO4, Macones GA1, Cahill AG1. PMID: 26344012
OBJECTIVE: To estimate the impact of admission cervical dilation on the risk of cesarean in spontaneously laboring women at term. STUDY DESIGN: Secondary analysis of a prospective cohort study of women admitted in term labor with a singleton gestation. Women with rupture of membranes before admission, induction of labor, or prelabor cesarean were excluded. The association between cesarean and cervical dilation at admission was estimated, and results were stratified by parity. Relative risks (RRs) and 95% confidence intervals (CIs) were calculated, using cervical dilation ≥ 6 cm as the reference group. Cesarean for arrest was secondarily explored. RESULTS: A total of 2,033 spontaneously laboring women met inclusion criteria. Women admitted at <6 cm dilation had an increased risk of cesarean compared with those admitted at ≥6 cm (13.2 vs. 3.5%; RR 3.73; 95% CI 1.94-7.17). The increased risk was noted in nulliparous (16.8 vs. 7.1%; RR 2.35; 95% CI 0.90-6.13) and multiparous (11.0 vs. 2.5%; RR 4.36; 95% CI 1.80-10.52) women, but was statistically significant only in multiparous women. CONCLUSIONS: Decreasing cervical dilation at admission, particularly <6 cm, is a modifiable risk factor for cesarean, especially in multiparous women. This should be considered in the decision-making process about timing of admission in term labor.
at 2 comments: