Dr. Thomas Wright Discusses A Common but Poorly Recognized Fat Disease Lipedema on St. Louis on the Air that is Commonly Confused with Obesity
Dr. Wright discussed the challenges so many women encounter trying to get a proper diagnosis and treatment for Lipedema. Lipedema is a fat tissue disorder causing excess accumulation of diseased fat in the legs and arms affecting up to 11% of women. Read the full press release here.
Don’t forget to read about the new Lipedema Research Study below!
New Lipedema Research Study Needs Participants like you!
Want to earn up to $800? Dr. Wright is working in collaboration with Washington University School of Medicine and Dr. Sam Klein, and Dr. Vincenza Cifarelli. This group of experts and leaders in the study and treatment of lipedema are looking for individuals to participate in this study to better and more comprehensively understand the disease.
What is the lipedema research study looking at?
The study will look at fat metabolism, fat tissue biology, and body composition in lipedema patients and the effects of weight loss in people with lipedema, with 3 major goals:
- Obtain a comprehensive whole-body, organ system, and cellular metabolic and immune system characterization of people with lipedema.
- Determine the therapeutic potential of diet-induced weight loss in this patient population.
- Compare lipedema to the “classic lipedema” population.
This study is generously being supported by the Lipedema Foundation.
Who can participate?
- Must have a diagnosis of lipedema by Dr. Wright.
- Women between 18 and 68 years old.
- The patient has a BMI between 30 kg/m2 and 50 kg/m2 (obese lipedema) OR a BMI between 19.5 kg/m2 and 26 kg/m2 (lean lipedema).
- None of the exclusion criteria below apply.
How will the study work?
Step 1: Baseline testing (~2 weeks)
After the initial screening, researchers will perform baseline testing in three areas: body composition, metabolic function, and adipose tissue biology. This requires 1 visit per week, for 2 weeks (2 visits total in this phase). Metabolic function and adipose tissue biology testing usually require an overnight stay at our facility, in a private room.
- Body composition testing: this will determine where an individual patient is experiencing fat accumulation. For example, does this patient have fat in their muscles, in a particular area of their body, in the muscle fibers, in the liver, and what is the percentage of fat in the upper body vs. the lower body?
- Metabolic function testing: How is each patient’s metabolic function prior to any changes?
- Adipose tissue biology: what is the patient’s current composition of their adipose tissue?
Step 2: Diet-induced weight loss (3-4 months)
Patients will have weekly visits to our facility at Washington University in St. Louis, meet with our in-house dietician, speak with her on the phone weekly, and will be given a scale to take home. The goal in this phase is to achieve 5-10% weight loss.
Step 3: Post-weightloss baseline testing (~2 weeks)
After achieving the desired weight loss, patients will repeat step 1 exactly as experienced before. Researchers are trying to understand how the weight loss may have affected your organs, or even how it may have affected the single cells in the patient’s fat.
Lipedema Research Study Meal Plans
- Calories will be calculated by the study’s dietician and reduced by 25% with modifications as needed.
- Dietician will help create individual participant meal plans and can accommodate gluten, dairy, nut, and egg-free meals as needed.
- Weekly calls with the dietician will include a review of meals from the week prior and will create a plan for the following week.
Think you qualify? Contact us ASAP!
Read more about the study here. To sign up, contact:
Vincenza Cifarella, PhD: email@example.com or 314-273-1386
Rick Stein, PhD: firstname.lastname@example.org or 314-286-0077
Survey Outcomes of Lipedema Reduction Surgery
Lipedema is a loose connective tissue disease affecting the limbs of women that is difficult to lose by diet, exercise, or bariatric surgery. Publications from Europe demonstrate that lipedema reduction surgery improves quality of life for women with lipedema, however there are no comparable studies in the United States to date. In a new study, experts collectively collected data from women with lipedema in the USA who have undergone lipedema reduction surgery to determine if quality of life, pain, and other measures improved after lipedema reduction surgery. Read more about the methods used in this study, plus the outcomes of post-surgery life for women with Lipedema here.
A Case of Stage 3 Lipedema, Misdiagnosis, & Malnutrition
This case highlights what many women with Lipedema come to understand at an early age – often unbeknownst to them, weight loss in their lower body is nearly impossible, regardless of the levels of calorie reduction or rigorous and regular exercise. For one 41-year old woman with Stage 3 Lipedema progression, the misdiagnosis of Lipedema as obesity led to protein and calorie malnutrition and ultimately required hospitalization and parenteral nutrition. Through this time, despite high levels of malnutrition, her legs remained swollen and enlarged, which ultimately and finally led to a correct diagnosis of Lipedema. Read more about her journey and the serious health consequences of misdiagnosis here.
Anorexia and Lipedema
Patients with lipedema may have anorexia nervosa, an eating disorder characterized by a distortion of body image, incorrect self-identification of being overweight, restricted eating behavior, and a relentless pursuit of weight loss. In a case report published in the American Journal of Case Reports, a young woman with disproportionate fat accumulation on the lower half of her body self-identified as having obesity. She developed restrictive eating behavior and became obsessed with weight loss, resulting in anorexia nervosa.
Lack of recognition of lipedema by medical professionals and the public as a weight loss-resistant disease can affect body image acceptance. Lipedema was mistaken for obesity by the young woman in this case and likely played a role in her development of an eating disorder. Eating disorders, such as anorexia nervosa, are not rare and may be more common in women with lipedema. Read more about her journey and the importance of Lipedema awareness here.
Lipedema Standard of Care Published For The First Time
As of May 28, 2021, Dr. Wright and nearly two dozen other Lipedema experts led by Dr. Karen Herbst published 85 consensus statements making up the first ever Standard of Care Guidelines for Lipedema in the United States. Prior to it’s publication, other countries such as Germany, Spain, the United Kingdom and The Netherlands have documented and published Standards of Care for women with Lipedema, but the United States continued to lag behind it’s international colleagues. Ultimately, this resulted in American women with Lipedema being underdiagnosed, misdiagnosed, dismissed, and underserved. This publication is the first of many steps in the right direction to increasing awareness and proper treatment for women with this disease.
Read more about this exciting development here.
Aetna – Clinical Policy Bulletin (CBD) Number 0031
There has been some movement from a major health insurance provider, Aetna. Policy number 0031, which addresses Aetna’s policy on cosmetic surgery was updated on March 29, 2019. This updated policy does include a subheading for “Liposuction for Lipedema”. The policy summarizes the literature Aetna reviewed when updating the policy. This literature included the standard of care clinical guidelines from Dutch and German lipedema experts. The policy also reviews studies showing the benefit of liposuction for Lipedema.
It is not entirely clear from the update what this means because in the same policy: Aetna’s CPB-003, they have listed the CPT Codes for liposuction surgery, CPT 15878-15879, suction-assisted lipectomy; upper and lower extremity, as “CPT Codes not covered for indications listed in the CBP” (pages 18 and 19 of the policy). This contradiction at a minimum makes it difficult to know for sure.
This means that although Aetna has recognized some of the research on lipedema and reviewed the clinical guidelines and recommendations, they still may not cover the liposuction procedure codes. The policy does address CPT 15877 suction-assisted lipectomy; trunk as a covered code when certain selection criteria are met. However, the medical criteria the policy, states are for liposuction when performed with a panniculectomy and also liposuction when performed with breast reconstruction after a mastectomy and not lipedema.
Aetna has covered lymph sparing liposuction for patients with lipedema before and this policy update makes it more likely that they will cover it in the future but there always be restrictions. We work with medical insurance companies every day to get them to cover lymph sparing liposuction for our lipedema patients. All the patients who have received insurance coverage so far have demonstrated to the medical insurance company they have completed conservative non-surgical treatment of lipedema without adequate relief of their lipedema symptoms.
Conservative measures that should be done prior to approval by insurance companies include: wearing compression garments, dietary interventions such as adherence to a low carbohydrate diet [either ketogenic diet or the more balanced anti-inflammatory diet] and lymphedema therapy. These conservative treatments are not just a requirement for the insurers and all of the standards of care guidelines they are an important part of managing lipedema for the rest of the patient’s life. Building a persuasive case for insurance company coverage for surgery involves a multiple visit documenting the stepwise adherence to at least a couple levels of conservative management of the symptoms of lipedema. Often the insurer will also need additional information from their insured patients on how the lipedema disease is impacting their life and mobility.
There is some good news for patients with lipedema: Aetna major health insurance provider reviewed the information on the effectiveness of a specialized type of liposuction for lipedema when certain medical necessity criteria are met. The next review date for this policy is January 9, 2020. We are hopeful that we will have published US studies ready for review when Aetna reviews this policy again and have more good news to report.
We have included the link below to the full Aetna CPB-0031 for your review.
Lymphedema Treatment Act
Currently, most of the supplies needed to manage lipedema and lymphedema are not covered by Medicare. Compression garments, donning devices and wraps, which are critical for the proper care and management of these diseases are not covered except when caused by cancer treatment. These garments are quite expensive and need to be replaced as often as every six months. The lymphedema can be just devastating when caused by an inherited condition as is the case of lipedema or an infection. If lymphedema is not properly controlled by compression garments it progress and spiral into a progressively disabling condition.
The Lymphedema Treatment act will improve coverage for lymphedema from any cause from Medicare. Other insurance will follow Medicare lead. This legislation is critical for improving the health and lives of patients who suffer from lymphedema. There is much to do. Please follow these links to learn how you can contact your representative in the US Congress and Senate. Also, learn how to promote awareness for this important cause through social media.
New Lawsuit Against Denying Coverage for Lipedema Treatment
If you do a simple online search you can find plenty of cases where lipedema treatment has been denied to potential patients. Lipedema can be extremely difficult to diagnose when you do not have a trusted physician to assist you. Recently, a new lawsuit was filed in Los Angeles County on May 16th by law firm Gianelli & Morris. The lawsuit was filed against Kaiser Foundation Health due to an alleged breach of contract by refusing to cover a surgical treatment for lipedema.
The plaintiff was denied the requested coverage for lipedema treatment by Kaiser Foundation Health. The treatment in question was a liposuction procedure to reduce the impact of lipedema. Kaiser countered the allegation, stating that they did not have access to physicians with the proper experience for the procedure. Instead of allowing the treatment to provide relief to the patient, they denied any form of compensation.
Treatment in Question
One important aspect of the lawsuit is that Kaiser Foundation Health implied that liposuction for lipedema is an experimental surgery. Studies have continued to show that lipedema liposuction is both safe and effective and can provide relief for the many symptoms of lipedema. The lawsuit specifically points out the benefits identified through various studies at the Stanford University Medical Center.
Gianelli & Morris
The plaintiff in the case is being represented by Gianelli & Morris, a successful law firm that has represented several state and federal cases for lipedema treatment denial. Robert Gianelli continues to remain committed to helping lipedema victims receive the treatment they deserve and need. Kaiser had referred their patient to a doctor who unfortunately misdiagnosed them with obesity; the doctor went as far to state they do not see lipedema as an actual condition to be diagnosed. Lipedema treatments deserve to be seen as what they are: a medical treatment that is not experimental or just for cosmetic purposes.
What To Do If You Think You Might Have Lipedema?
Unfortunately, there are not that many physicians who recognize the disease, and also can rule out confounding diagnoses, such lymphedema secondary to venous insufficiency with a Doppler venous ultrasound. Only with the proper clinical exam of the patient can a doctor rule out secondary lymphedema and other foot disorders to make a reliable diagnosis of lipedema. You should be suspicious of doctors who claim they can diagnose lipedema over Skype. The diagnosis is an important first step in getting the proper treatment and it also helps to build a case if you decide to try to get insurance coverage for your lipedema treatment. Do not let the reports of denied coverage prevent you from seeking the help you need.
Treatment of Lipedema
The surgery can be expensive and unfortunately as the Kaiser case above illustrates in some cases, patients may have to use legal remedies to get their medical insurance company to cover the needed care. It can be difficult but some insurance companies are starting to cover some treatments for lipedema .
All the published guidelines recommend treatment should start with compression garments and lymphedema therapy. If the non-surgical treatments like such as compression and lymphedema therapy do not give adequate relief patient medical insurance in some cases will cover specialized lymph sparing liposuction as an out of network benefit. If you chose to proceed with lymph sparing liposuction, please chose an experienced surgeon who fully understands the disease, takes great care not injure the lymphatics and will work with your lymphedema therapist and other members of your care team.
Free Lipedema Informational Seminar
Mon, May 13, 2019, 8:30 AM – 10:00 AM CDT
Laser Lipo & Vein Center
830 Waterbury Falls Drive #Suite 202
O’Fallon, MO 63368
Lipedema – A Devastating Disease too Often Overlooked
by Dr. Thomas Wright for the Vein Magazine
Save the Date
Lipedema Educational Seminar
Meeting Room at Staybridge Suites O’Fallon
1155 Technology Drive, O’Fallon, MO 63368
Thursday, June 14, 9 am to Noon
A casual, educational seminar that will discuss what Lipedema is, how it is diagnosed, and the stages of Lipedema. Conservative and surgical treatments will also be discussed. Dr Vincenza Cifarelli, from Member of Washington University Research Team will be on hand to discuss current NIH funded study looking at Lipedema and Fat Metabolism. Attendees will have the opportunity to ask questions, meet Dr. Thomas Wright MD RVT FACPh, and meet representatives of Tactile Medical. The seminar is free. A Complimentary Healthy light lunch will be provided.
A block of rooms has been reserved at the Staybridge Suites at a discounted rate for this event. You must mention the Laser Lipo and Vein Center block when reserving your hotel room in order to receive the discounted rate. Call 636-300-0999 or visit www.staybridge.com
For questions about the seminar please email Brandy at Brandy@Wrightvein.org or call 636 614 1665.
Lipedema also known as “Painful Fat Syndrome” is a disease that is underappreciated and often misdiagnosed. The disease affects ten percent of women. It causes fat to be swollen and disproportionate primarily in the lower limbs and can spread to the abdomen and arms. Many women who suffer from Lipedema are not aware that they are actually being affected by this disease, and rather think that they are just overweight or obese.
Wright will discuss causes and stages of Lipedema as well as how Lipedema is diagnosed. He will also discuss conservative treatment options such as diet and supplements, physical therapy, and compression Surgical options such as lymph sparing suction lipectomy will also be discussed. Wright is one of the few surgeons in the country who diagnoses patients with Lipedmea and performs the lymph sparing lipectomy surgery.
The event is expected to last about three hours, and is free of charge. Attendees will then have the opportunity to be evaluated for Lipedema on Thursday afternoon or on Friday. Insurance will be billed for the evaluation, or patients may opt to pay out of pocket for the evaluation. Those who chose to be evaluated will also have an opportunity to discuss treatment options both conservative, and surgical with Wright. Representatives from Tactile Medical, makers of the Flexitouch compression pump, and from Sigvaris compression garments will also be attending the event to speak with attendees about conservative treatment options. A light lunch will be served following the event. A block of rooms is reserved at a discounted rate for out of town attendees at the Staybridge Suites. For more information or to RSVP for the event, please call Laser Lipo and Vein Center at 636-397-4012. To reserve a room at Staybridge Suites for this event please call 636-300-0999.
FDRS Press Release
Dr. Wright will be speaking at the Fat Disorders Research Society Convention on April 28th, 2018 at the Double Tree Dallas, where he will shed light on various elements of Lipedema Disease. Difficulties in diagnosing the disorder, effects and causes of it, and the most cutting-edge treatments available today will all be discussed. As a board-certified physician and specialist in Lymphatic and Venous Medicine and the industry leader in treating Lipedema Disease, Dr. Wright is sure to provide a valuable perspective at this great event.
Lipedema is a type of adipose tissue disorder, which is one that affects a person’s fat cells and the way in which they interact with the rest of the body. This disorder and others like it are often confused with obesity, but in reality, it comes with much different causes, symptoms, and effects.
To put it simply, it results in an unnatural accumulation of fat throughout the body, particularly in the buttocks and the legs. What starts as a condition that negatively affects a person’s confidence and psyche can quickly lead to chronic pain and more serious medical conditions. Luckily, there are ways to address these disorders which will help maintain a healthy lifestyle, body, and outlook.
The Fat Disorders Research Society is an organization that strives to improve the lives and overall health of all those affected by lipedema and many disorders like it. This convention taking place from April 27th to the 29th is a great example of this society’s goals as medical experts in fat disorders to come together to teach and learn from one another.
You will find commonality among the disorders addressed at this conference in that they do not receive the same attention from the medical community as many other disorders. This is because it is the mission of the FDRS to address people’s problems that are not being addressed elsewhere. Being on the cutting edge of adipose disorders and their treatment is an endeavor which this conference and the work of people like Dr. Wright support.
Dr. Wright knows as much about this disease as anyone else practicing medicine today and has made it his mission to help as many people who are suffering from it as possible. A big part of how he does this is by providing the best treatment for those that seek it. State of the art liposuction techniques and technology that spare the lymph nodes are his specialty. But another big aspect of his mission is sharing knowledge and spreading awareness of lipedema and disorders like it. The role he will be taking as a speaker at the upcoming FDRS conference is one step on this mission.
By visiting https://www.laserlipoandveins.com or calling (636) 614-1665 you can learn about the amazing things Dr. Wright is doing. Visit https://www.fatdisorders.org to learn more about the upcoming conference along with some of the great work happening within the Fat Disorders Research Society.
Project: Genetic Risk Factors and Corresponding Mechanisms Underlying Lipedema
Lipedema is a painful and debilitating condition affecting approximately 10% of adult women. It is characterized by excessive and painful fat in gynoid areas (buttocks, hips, legs) and a relatively small waist circumference. By capitalizing on multiple complementary studies, we seek to robustly identify genetic risk factors for lipedema and follow-up on specific loci by measuring gene expression levels in affected and unaffected fat tissue.
By identifying the genes that cause lipedema, we can identify physiological mechanisms that may be therapeutically acted upon, and potentially make predictions of an individual’s risk for lipedema. A better understanding of the pathways and mechanisms underlying lipedema can thus lead to improved prevention and treatment.
Dr. Herbst and Dr. Wright Explain the Treat Study to Help Understand Lipedema
Dr. Thomas Wright and Dr. Karen Herbst go into detail on lipedema and the Treat Study. With their expertise, you will get the inside scoop of what the top doctors of today are interested in the world of lipedema and the treatments for lipedema.
Support Lipedema Research in the USA
Dr Wright and Dr Buck are enrolling patients in a study on Lipedema. The study aims to determine the effect of weight loss on body composition and fat distribution, metabolic function (insulin sensitivity) and adipose tissue biology in women with lipedema before and after diet intervention. These results will be compared to women with obesity without lipedema. The study will last ~8-9 months and requires 5 outpatients visits and 1 inpatient visit before weight loss, and 5 outpatients visits and 1 inpatient visit after weight loss. We aim to achieve 8%-10% weight loss in ~4 months. All meals will be provided by us for the duration of the weight loss period. Study participants will be supervised weekly by our dietitian during the weight loss period.
Compensation for travel and free meal and free metabolic testing are provided for study participants.
If you are interested please contact us on the contact form or Contact Melisa Moore:
Help us Learn more about the disease called Lipedema
i) Diagnosis of Lipedema by Dr. Wright or Dr. Donald Buck
ii) Age ≥18 and ≤55 years;
iii) BMI ≥30.0 and <45.0 kg/m2>
i) Previous bariatric surgery or liposuction surgery
ii) Diagnosis of Type 2 Diabetes
iii) HbA1C <5.7%. iv) Structured exercise >2 days/week for ≥35 minutes of intense exercise (e.g., jogging, activity that causes heavy breathing and sweating) or ≥150 min per week of structured exercise (e.g., brisk walking)
v) Unstable weight (>4% change during the last 2 months before entering the study)
vi) Significant organ system dysfunction (e.g., diabetes, severe pulmonary, kidney or cardiovascular disease)
vii) Cancer or cancer that has been in remission for <5 years viii) Major psychiatric illness ix) Conditions that render subject unable to complete all testing procedures (e.g., severe ambulatory impairments, limb amputations, or metal implants that interfere with imaging procedures; coagulation disorders) x) Use of medications that are known to affect the study outcome measures (e.g., steroids, non-statin lipid-lowering medications) or increase the risk of study procedures (e.g., anticoagulants) and that cannot be temporarily discontinued for this study xi) Smoke cigarettes >10 cigarettes x/week
xii) Women who consume >14 units of alcohol per week
xiii) Pregnant or lactating women
xiv) Vegans, vegetarians, those with lactose intolerance and/or severe aversions/sensitivities to eggs, fish, nuts, wheat and soy, and/or any individuals with food allergies that induce an anaphylactic response
xv) Persons who are not able to grant voluntary informed consent
xvi) Persons who are unable or unwilling to follow the study protocol or who, for any reason, the research team considers not an appropriate candidate for this study, including non-compliance with screening appointments or study visits.
Instagram Star with 70 Inch Butt Diagnosed with Lipedema
A little-recognized disorder, lipedema, may be responsible, says a local expert. Lipedema makes you look like you’ve been eating too much when in fact, your fat cells are retaining fluids and growing exponentially larger than normal because of this condition.
Instagram star Randalin has is someone with lipedema who is not shy about her large hips and thighs from lipedema. In fact Randalin seems to have embraced her shape and see her curves as assets.
Maybe Being Fat Isn’t Your Fault: A Look at Lipedema
On the tv show The Doctors, lipedema has once again come up. This time it’s with someone who’s big behind has made her a star. This isn’t the first time I’ve run into Raylynn on the internet. I came across her picture elsewhere, where people were less kind about her body type. I went to her Instagram account and could instantly tell what she had was lipedema. It’s just so obvious with the tiny waist and flat stomach. You can see her arms getting slightly bigger now too. Anyhow, on this The Doctors segment, they have plastic surgeon Dr. Andrew Ordon do a brief exam on Raylynn and he diagnosed her with this horrible condition. I’m actually excited about this particular diagnosis because she’s an internet celebrity and this is going to make some rounds. Her fans are going to talk about this episode thus talk about lipedema. I feel we’re one step closer to the right direction.
Column: The ‘Disease They Call Fat’ Misunderstood, Misdiagnosed
Koehrer is indeed struggling with extra weight. The additional pounds the 74-year-old Montgomery woman carries in her legs, thighs and midsection, however, are not the result of poor lifestyle choices but rather an incurable and chronically progressive disease that causes painful accumulations of fat which will not respond to diet or exercise.
Mikel Ruffinelli Woman with the Largest Hip in the World
Mikel Ruffinelli is a woman born 43 years ago, at first she was a normal woman like most women, has a height of 5 feet 4 inches and weighs 180 pounds. But it changed drastically when she gave birth to her first child, her weight increased 56 pounds, and strangely again the weight gain is only happening on her hips alone, then more and more often have a child for some reason hipik Mikel increasingly enlarged. And after giving birth to her fourth child the width of this woman’s waist reaches 8 feet and makes her name listed in Guinness World Records as the widest hip woman in the world. In the medical world the disorder is called lipedema.
Living with Lipedema
After receiving the diagnosis of Lipedema, all heads turn to the Internet for the glory answers of what, how, and the why. And of course, who else? You view minimal reporting from doctors and remind yourself, “That’s probably why my family doctor thought I had painful cellulite.” Yes, you are shocked, and agree to never return to a doctor who believes in such falseness. By the way, we did our research and indeed, there is no such thing as painful cellulite.
Kim Kardashian Does Not Have Lipedema
As a physician who diagnoses and treats lipedema, I was very concerned and disappointed in the misunderstandings and incorrect information put forward in recent National Enquirer magazine story, “Kim’s bubble butt is going to Burst”. Not only does this article’s highly exaggerated title reflect a clickbait falsehood rooted in myth and misinformation, the many claims made by the article are also completely false and highly irresponsible.
Kim’s Bubble Butt Is Going to Burst
Bottom-Heavy Kim Kardashian is battling an incurable butt disease – that could lead to her lower limbs exploding in a bloated mass of fat!
Lipedema Causing Limbs to Explode!
I saw the articles about Kim Kardashian having lipedema, what I didn’t see was that the National Enquirer claimed that her “lower limbs could explode in a bloated mass of fat.”