Risorse diagnosi

Risorse, chiarimenti e letteratura

Gli specialisti affiliati alla LIO hanno preso visione delle LINEE GUIDA e di comune accordo dichiarano di stadiare e tipizzare la patologia del lipedema secondo criteri di classificazione condivisi.  

In questa sezione abbiamo raccolto ulteriore materiale informativo utile alla diagnosi di lipedema, nella speranza che tutti i professionisti che vogliono accostarsi alla nostra patologia ne prendano visione.

VAI ALLA SEZIONE DIAGNOSI

La Fat Disorders Resource Society (FDRS) è una delle maggiori fonti d’informazione sul lipedema. Le loro attività provengono da un gruppo di patient advocacy che da dieci anni organizza una conferenza annuale destinata ai pazienti, ma in cui intervengono i migliori specialisti da tutto il mondo. Il sito web della FDRS contiene centinaia d’informazioni. In origine era denominata Fat Disorders Research Society e il vecchio sito web, accessibile tramite Google WayBack machine continua ad essere una preziosa fonte informativa. Posseggono una Pagina Facebook  e iscriversi alla loro Maillist consente di tenersi aggiornati 

Rivediamo la raccolta di anamnesi, l’esame obiettivo e la valutazione delle pazienti chirurgiche. 

Il canale youtube della FDRS offre una quantità innumerevole di video informativi, estratti dalle conferenze annuali.

La loro Symptoms page continua a ricevere numerosi accessi come punto di riferimento per i sintomi riferiti dai pazienti. 

Dr. Herbst – IL COLLOQUIO DIAGNOSTICO – FDRS
Dr. Herbst – DIAGNOSI: ESAME FISICO – FDRS
Dr. Herbst – VALUTAZIONE POST LIPOSUZIONE – FDRS

Diagnosing Lipedema Part 1 – Diagnosis Interview

Karen Herbst and Yvonne Russell interviewed Lori Doman, a potential lipedema patient. Lorie begins by explaining her questions about why her body isn’t responding to diet and exercise. Lori explains that when she was a child, she was exceptionally skinny; however, after puberty, her hips grew. Later, after the birth of her four children, her body became extremely swollen. Lori does yoga four to five times a week, spin twice a week, weight training and circuit training, but still struggles to lose any weight. Her mother also struggles with the same circumstances. If she does lose weight, Lori states that the first place is her waist. This however makes it hard to find pants that fit because of her small waist, but large hips and legs. Lori finds herself rapidly losing flexibility and becoming more stiff, despite her childhood full of cheerleading and hypermobility. Yvonne explains in the video that after knowing Lori for many years, she has witnessed the hard work and determination that Lorie has put fourth to lose weight and that Lori has suffered emotionally, which affects her confidence.

Diagnosing Lipedema Part 2 – Physical Exam

Herbst conducts a physical exam for lipedema. She begins by examining the head, neck, supraclavicular area, and chest feeling for bone and firm tissue, opposed to fat tissue. Since the fat is not depressed, Karen can assume there is some type of lymphatic dysfunction. Karen examines the weight of the patient’s breast tissue, suggesting that the patient may have some fluid in the breast tissue. Karen feels for nodules in the hands, as well as checks the joints in the patient’s hands. Karen finds nodules in the cubital region of the arm, nodular tissue along the brachioradialis, and acanthosis nigricans in the axillary area. Following, Karen examines the abdomen from behind by pressing along the ribs looking for nodular tissue and abnormalities. She palpates the tissue along the hips and notices disproportion throughout the patient’s body. Karen finds superficial varicosities on the thighs, suggesting that further investigation of the veins is necessary. Karen looks for nodules in the thighs, behind the knees, on the lower leg, and ankles. With the patient’s joint pain and stretch marks, she would qualify as having hypermobility, which could be contributing to the progression of her lipedema and her inability to lose weight. Looking at the hemoglobin a1c, lipid profile and blood pressure would allow the patient to be classified with metabolic syndrome. In a nutshell, Karen Herbst concludes that the patient has lipedema, hypermobility, and metabolic syndrome.

Assessing Lipedema Post Liposuction

The purpose of performing a physical exam on an individual post liposuction with lipedema is to look for excess tissue and not bone.
Begin at the top of the head moving to the back, you should feel bone. Continue to palpate as you move your hands from back to front on the neck using a rolling technique of the fingers. Now focus on the supraclavicular area by having the patient shrug, you want the extra fat to depress, indicating lymph is moving through the area. Next, have the patient make a fist with a hole through the center bringing it to the mouth and breathing in while you observe the supraclavicular area for excess fat. Continuing with the trunk palpate the chest, less fat here on women may be a sign of lipedema. Finish the trunk by checking the weight of the breasts by gently lifting. Move to the hands and begin by bending the fingers back looking for fat at the MCP joints and base of the thumb. Flex the wrist observing for formation of skin folds then continue with the rolling technique of the fingers up the arm paying close attention to the area over the bracioradialis and under the armpit. In stage I/II nodules are often present over the bracioradialis muscle. Next, move to the abdomen, stand behind the patient and palpate under the ribs rolling the fingers laterally over the abdomen and moving centrally. The superpubic area is a common area for nodules, be sure to palpate well. Take note that fibrotic tissue often presents in the groin and top of the hips. Continue with larger sweeping palpations over the buttock by running fingers sideways, up, and down. Finish by feeling the weight of the buttock by gently lifting at the base. Finally, begin at the top of the legs and roll the fingers over the thigh towards the knee, fibrotic tissue is often found medially. Both sides of the knees, just inferior, and the popliteal space are common areas for pockets of fat and nodules. Perform the stemmer sign by pinching the skin on the top of the feet; a positive stemmer occurs when the skin cannot be pinched. On the inside of the foot observe for piezogenic papules, fat herniating to the skin. In stage I, there is often an absence of fat around the achilles and malleoli, in higher stages fat will be present here. Common spots for lipedema in women include: posterior arm, hips, buttocks, thighs and into ankles.

Lipedema Overview & Physical Exam by Dr. STEVEN M. Dean

Dr Dean gives an overview of lipedema and discusses the physical exam. Dr Dean makes a case for the vaso-spastic nature of lipedema and demonstrates associated likely blood capillary and vein issues. Steven M. Dean, DO, FACP, RPVIis a Professor of Clinical Internal Medicine and Program Director of Vascular Medicine at The Ohio State University Medical Center. He is also Director of the Peripheral Vascular Laboratory at the OSU Heart Centers at Stoneridge Upper Arlington, and Gahanna Medical Centers. Dr. Dean has published numerous original manuscripts in peer reviewed journals as well as textbooks. Additionally, he has edited three textbooks in the last six years including the recently released “Color Atlas and Synopsis of Vascular Disease.”

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Lipedema is not rare, but the Diagnosis is Rarely Made – John R Bartholomew, MD
Help! I Can’t Find a Local Doctor to Help Me! – John Jerry Bartholomew, MD

La Lipedema Foundation raccoglie e fornisce materiale di studio sulla patologia. I criteri diagnostici sono raccolti. Il Registro è uno strumento importantissimo per medici e pazienti. 

Facciamo riferimento in particolare alle indicazioni esposte da Lipedema Foundation QUI. L’anamnesi del paziente e l’esame clinico sono fondamentali. L’ispezione manuale deve essere completa e fatta da un medico esperto e in grado di riconoscere il grasso nodulare nelle zone affette, ispezionandole tutte IN TUTTO IL CORPO (e non solo le gambe come fanno in molti specialisti del linfedema).

Guarda anche:
Riconoscere il Lipedema
I sintomi del Lipedema
Definizione nosologica e quadri clinici

Il primo articolo sul lipedema, dalla Mayo Clinic. Annals of Internal Medicine. 1 May 1951.

Lipedema of the legs: a syndrome chacterized by fat legs and edema.

Lester E. Wold, MD; Edgar A. Hines Jr, MD, FACP.; Edgar V. Allen, MD, FACP.

Questo articolo del 2016 riassume i criteri diagnostici utilizzati dalla Dr. Herbst, sia per quelli aggiunti da lei che per quelli già individuati alla Mayo Clinic nella prima descrizione della patologia

Lipedema: A Relatively Common Disease with Extremely Common Misconceptions
Donald W. Buck, II, MD and Karen L. Herbst, MD, PhD

Almost exclusive occurrence in women*
Bilateral and symmetrical manifestation with minimal involvement of the feet*
Minimal pitting edema*
Negative Kaposi–Stemmer sign*
Pain, tenderness on pressure*
Easy bruising*
Persistent enlargement after elevation of the extremities or weight loss*
Arms are affected 30% of the time**
Hypothermia of the skin**
Swelling worsens with orthostasis in summer**
Unaffected by caloric restriction**
Telangiectasias

*** Original Wold/Hines criteria 1940 and 1951

** Added by Dr Herbst

CRITERI CLASSIFICATIVI ULTERIORI

Qui si può leggere del SEGNO DI SIMARRO, segno patognomonico del lipedema, presente anche negli stadi più precoci della malattia.
http://lipedema.center/
DIAGNOSI: http://lipedema.center/diagnostico/

ULTERIORI INFORMAZIONI: http://lipedema-en.localhost.es/

Lipedema—An update
Uwe Wollina
First published: 18 December 2018 https://doi.org/10.1111/dth.12805

 

Lipedema is a chronic disabilitating disease affecting the subcutaneous adipose tissue of the extremities in females during or after puberty. The disease is characterized by bilateral swelling of legs and/or arms, bruising, and pain. In contrast to lymphedema, the most distal parts remain unaffected. In contrast to obesity, patients with lipedema have a lower risk of diabetes mellitus. The pathogenesis is not well understood. However, hormonal factors seem to play a vital role, as it is an exclusively female disorder. The recent advantages in understanding and treating lipedema are reviewed.

 

APPROFONDIMENTI

– DIAGNOSI IN LIPEDEMA.NET. SITO WEB DEL Dr. Thomas Wright, medical director of Laser Lipo and Vein Center

– SITO WEB LIPOCURA PER LA DIAGNOSI:

– SITO WEB LIPOEDEMA PORTAL PER LA DIAGNOSI

– Lipedema Overview & Physical Exam by Dr Dean (Copyright FDRS 2017)

– Lipedema Evaluation, Diagnosis and Treatment Plan by Dr. David Amron (Copyright The Roxbury Institute, 2017)

Sito del Dr. Ulrich Herpertz, internista – linfologo – edematologo

Int J Womens Health. 2016; 8: 389–395.
Published online 2016 Aug 11. doi: 10.2147/IJWH.S106227
PMCID: PMC4986968
PMID: 27570465
Lipedema: diagnostic and management challenges
Anne Warren Peled and Elisabeth A Kappos

Lipedema is an uncommon disorder characterized by localized adiposity of the lower extremities, often occurring in females with a family history of the condition. The adiposity extends from hips to ankles and is typically unresponsive to weight loss. In addition to the aesthetic deformity, women also describe pain in the lower extremities, particularly with pressure, as well as easy bruising. Although the condition is well described, it is relatively rare and often misdiagnosed. The purpose of this review is to describe the initial evaluation and diagnosis of lipedema and discuss treatment options.

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SULLA DIAGNOSI DIFFERENZIALE CON ALTRE PATOLOGIE:

Thick legs – not always lipedema
Stefanie Reich‐Schupke Peter Altmeyer Markus Stücker
First published: 11 December 2012 https://doi.org/10.1111/ddg.12024

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. It is characterized by disproportional obesity of the extremities, especially in the region of the hip and the legs, hematoma development after minimal trauma, and increased pressure‐induced or spontaneous pain. Aids for making the correct diagnosis are (duplex) sonography, the waist‐hip index or the waist‐height index and lymphoscintigraphy. Important differential diagnoses are constitutional variability of the legs, lipohypertrophy in obesity, edema in immobility, edema in chronic venous insufficiency and rheumatic diseases.

The symptom‐based therapy of lipedema consists of conservative (compression, manual lymphatic drainage, exercise) and surgical treatments (liposuction). Until now there is no curative therapy. Obesity is an important risk factor for the severity and prognosis of lipedema. Further studies for a better understanding of the pathogenesis of lipedema and in the end possible curative treatments are urgently needed.

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Z Rheumatol. 2018 Nov;77(9):799-807. doi: 10.1007/s00393-018-0546-y.
[Differential diagnostics of lipedema and lymphedema : A practical guideline].
[Article in German]
Wollina U1, Heinig B2.

Lipedema is a symmetrical disorder of the subcutaneous adipose tissue that affects almost exclusively women in postpubescent age. The trinity of disfiguring hyperplastic adipose tissue of the proximal extremities, increasing pain over time and bruising is characteristic. Lymphedema can occur in both sexes and is differentiated into primary and secondary subtypes. Symmetry is not a prerequisite for diagnosis. Characteristic for lymphedema is the disproportion between lymphatic fluid and the capacity of lymphatic vessels. The most distal body parts are always more severely affected than proximal parts. In the initial phases lymphedema is painless but in advanced stages tension pain can occur. The combination of both disorders has been described; however, lipedema is not responsible for subsequent lymphedema in contrast to central obesity, which significantly increases the risk of lymphedema. The differential diagnosis is of utmost importance for a meaningful management.

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Wien Med Wochenschr. 2017 Oct;167(13-14):343-348. doi: 10.1007/s10354-017-0566-2. Epub 2017 May 10.
[Lipedema: up-to-date of a long forgotten disease].
[Article in German]
Wollina U1.

Lipedema is a chronic disorder of subcutaneous adipose tissue of unknown etiology not uncommon among post-puberty women. The disease has a negative impact on self-esteem, mobility, and quality of life. Lipedema is characterized by symmetrical, disfiguring hyperplastic adipose tissue combined with bruising and pain. Untreated lipedema fosters osteoarthritis, secondary lymphedema, limited mobility, and psychosocial stigmatization. Treatment consists of conservative complex decongestive therapy and surgery by microcannular tumescent liposuction. Liposuction is the only available treatment capable to reduce the pathological adipose tissue durable and to prevent complications.

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Int Wound J. 2018 Dec;15(6):921-928. doi: 10.1111/iwj.12949. Epub 2018 Jun 29.
Lipoedema is not lymphoedema: A review of current literature.
Shavit E1, Wollina U2, Alavi A1.

Lipoedema is a rare painful disorder of the adipose tissue. It essentially affects females and is often misdiagnosed as lymphoedema or obesity. It is globally misdiagnosed or underdiagnosed, and the literature is lacking appropriate guidance to assist clinicians towards this diagnosis. However, the need to recognise this disorder as a unique entity has important implications to establish proper treatment and, therefore, its tremendous effect on patients. Early diagnosis and treatment can turn these patients’ lives upside down. The aim of this review is to focus on the clinical guidance, differential diagnosis, and management strategies. In addition, other aspects of lipoedema, including epidemiology and pathogenesis, are also being discussed here. Lipoedema is distinct from obesity and distinct from lymphoedema, although it might progress to involve the venous and lymphatic system (venolipedema or lympholipedema or both). Late diagnosis can leave the patient debilitated. Management of lipoedema includes weight loss, control of oedema, complex decongestive physiotherapy, liposuction, and laser-assisted lipolysis. However; there are increasing reports on tumescent liposuction as the preferred surgical option with long-lasting results. The role of more randomised controlled studies to further explore the management of this clinical entity remains promising.

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Lipedema
W. Schmeller, I. Meier-Vollrath

Lipedema was first described by Allen and Hines in 1940 (1). Today, however, a large number of physicians remain unaware of the disease and its
symptoms. Many lipedema patients are not correctly diagnosed or effectively treated until after they have endured decades of suffering (2).
Epidemiological statistics on the incidence of lipedema are not available. An investigation of patients treated at one lymphedema clinic from
1995 to 1996 revealed lipedema in approximately 15% of the patients
treated on an inpatient basis (3). A similar number (8% to 17%) was reported in surveys carried out in 2003 in four lymphedema clinics in Germany (4).
In contrast to lymphedema, literature on lipedema is extremely sparse.
Lipedema findings in the Anglo-American literature in particular often
report only isolated case studies (5-8). Many more publications, including a monograph, are available in German literature (9)

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Literatur:

• McNally PG et al.: Lipohypertrophy and lipatrophy complicating treatment with highly purified bovine and porcine insulins. Postgrad Med J 1988; 64: 850-853.

• Peter Hien, Bernhard Böhm: Diabetes-Handbuch: eine Anleitung für Praxis und Klinik. 5. Aufl.

• Herpertz U. Das Lipödem – was ist das genau? Physiotherapie 1993; 5: 191-195.

• Herpertz U.: Das Lipödem. Zeitschrift für Lymphologie 19/1, 1995, 1

• Herpertz U.: Krankheitsspektrum des Lipödems an einer Lymphologischen Fachklinik. Vasomed 9/5, 1997, 301

• Herpertz U.: Entstehungszeitpunkt von Lipödemen. Lymphologie in Forschung und Praxis 08/2, 2004, 79

• Herpertz U.: Adipositas-Diagnostik in der Lymphologie. Lymphologie in Forschung und Praxis 13/2, 2009, 34

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DISCLAIMER

Lio Lipedema Italia Onlus is grateful to all valuable websites and lipedema sufferers’ associations for all the precious materials
which are generously provided in their social channels to the benefit of all lipedema community worldwide. 

Please consider visiting their websites for more info.