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What is Lipedema ?



Lipedema is often misdiagnosed as obesity or Lymphedema. Lipedema is actually a chronic condition that is symmetrical but disproportionate build up of nodular and fibrotic fat in the legs, hips, buttocks, and sometimes arms (30%). However, the hands and feet are NOT affected, giving a cuffing presentation at those points. It is characterized by fibrotic loose connective tissue and it typically occurs, almost exclusively, in women (11%). The onset is most commonly around times of hormonal changes like puberty, pregnancy, and menopause. The exact causes of lipedema are not known, but main factors may include hormones, genetics, inflammation, metabolism, and abnormalities within the lymphatic system. Lipedema can worsen in the advanced stages and can place someone at increased risk for lipolymphedema (Lymphedema induced by Lipedema).



Characteristics of Lipedema can include:

    Change in skin texture (it can look and feel lumpy)

Inflammation

    Joint & mobility issues

    Skin hypothermia

Pain

   Easy bruising

   Fatigue

    Diet resistant fat

The severity of these symptoms can range from none to severe and they can be constant or come and go.


Stages of Lipedema

Stage 1: Generally smooth and even skin surface with enlarged fat tissue, and swelling that can come and go

Stage 2: Uneven skin pattern with indentations and dimpling in the skin, and development of lipomas (a fatty lump of tissue under the skin)

Stage 3: Large adipose tissue growths causing deformity of the thighs and around the knees

Stage 4: Lipolymphedema which means both lipidema and lymhedema are present. Typically there are also large overhangs of tissue on the arms and/or legs called lobules


How is it diagnosed?

     Physical exam

     Family history

     Medical testing

        Lymphoscintography

        Ultrasound to rule out peripheral vascular disease

        Genetic testing (AKR1C1)


Treatment

Complete Decongestive Therapy is considered the gold standard of care and is composed of Manual Lymphatic Drainage (MLD), compression, exercise, and skin care. Studies indicate best outcomes consist of reduction in pain, decrease girth measurement and increased stamina are all results from manual lymphatic drainage and exercise. Nutritional strategies are also recommended but can vary. Definitely consider working with a dietician to see if any of the following researched diets may be right for you: paleo, keto, RAD (rare adipose disorders) diet, low-carb, high-fat eating plan, or LCHF (low carb, high fat) diet.


A certified lymphedema therapists (CLT) is the perfect provider to evaluate and treat lipedema. These therapists have the training to differentiate between lymphedema, lipedema, and other types of swelling, and can work with you to better manage this chronic condition.


Surgery is another option considered. Liposuction is the main surgical intervention for lipedema. Although there is limited research, studies have found liposuction may be effective in reducing the size of the extremities and complaints associated with lipedema (ie spontaneous pain, easy bruising, sensitivity to pressure, impairment in quality of life, restrictions to mobility, edema, feeling of tension and general impairment.)

Most insurance companies and many surgeons will want to see that you have tried conservative treatments and that you have a good routine with these treatments before doing surgery. Furthermore, even after surgery, you will need to maintain the conservative treatment habits you established to best manage your lipedema.


If you have lipedema, please know that you are not alone. June is Lipedema awareness month. There is help available, and many people do well with conservative treatments including staying active, performing MLD, using compression garments, and optimizing nutrition. Click for more information about Lipedema.


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