What is it?

In general, Lipedema is a poorly understood disease in the United States; statistics show it is markedly under-diagnosed in this country. Lipedema is a painful fat disorder that, if untreated, can cause multiple health problems leading to mobility issues.   The quality of life, emotionally and physically, for a Lipedema patient often suffers because the disease is typically dismissed as simple obesity.

How often have you seen a woman who appears to be a size 8 or 10 from the waist up and a size 18 or more from the waist down with unusually large, column-like legs?  Women who have this body profile more often than not are exhibiting classic early stage Lipedema. As Lipedema progresses, fat will increase in the lower body.  Unfortunately, Lipedema patients tend to gain weight in the lipedemic areas, and can only lose it in the non-lipedemic areas. Even bariatric surgery will only result in fat loss primarily from the waist up. Lipedemic fat cannot be exercised or even starved away.

Lipedema is a disorder of adipose tissue that occurs almost exclusively in women; it has also been called ‘painful fat syndrome’. (Although Lipedema affects mostly women, there are a few cases that have been seen in men.)  Typically there is abnormal bilateral and symmetrical swelling of the legs and hips that extends down towards the ankles where the fat forms a ring just above the ankle. This swelling is due to accumulations of fat and fluid in the tissues under the skin. Fatty bulges can be seen on the outer surfaces of the thighs and sometimes the upper arms are affected as well. Interestingly enough, the swelling often extends from the waist down, almost in a distinct line toward the ankles, with the feet remaining unaffected.  This disorder can be inherited; most cases gradually develop during puberty, although it may develop or worsen due to trauma, such as surgery, peri-menopause or pregnancy. Lipedema has been seen in morbidly obese people and in anorexic individuals.  It may be possible to limit the effects of Lipedema, through careful weight management, if diagnosed early enough. There are estimates that put the incidence of lipedema as high as 11% of the adult female population. We are talking millions of women here.

Symptoms

Lipedema causes painful fat and there is often pain along the shin. The excess fat is symmetrical and involves both legs equally. In the early stages, the upper body may remain slender as the lower body enlarges and fat accumulates in the hips, thighs and legs.  There is usually a ring at the base of the ankle where the swelling stops- this ring is characteristic of Lipedema. The swelling does not involve the foot. If weight is lost, it will be lost in the upper body and not in the lower body between the waist and ankles.  There is often swelling in the legs towards the end of the day which usually resolves overnight only to begin again the next day. The edema is not pitting. Lipedema typically does not have Stemmer’s sign as a symptom. Nodules may develop within the fat and become larger lumps (lobules) as the disease progresses.  These nodules and lumps can be painful. The patient will often complain of pain when touched. Lipedema fat contains a lot of fluid and may eventually progress to secondary Lymphedema, (called Lipo-Lipedema) without proper management due to the increasing fat cells placing a huge burden on the lymphatic vessels.  Since Lipedema fat is very painful, the normally-helpful compression garments may not be tolerated, therefore putting the patient at further risk of ever increasing Lipedema, uncontrolled Lymphedema, blood infections, fibrosis and decreased mobility.  With Lipedema, patients bruise easily and may have subcutaneous bleeds.

Without a proper diagnosis and treatment, women with Lipedema are at very high risk for obesity because the lipedemic fat cannot be lost. Obesity is a common complication of lipedema. As more weight is gained, additional stresses are placed on all of the body systems. Proper diet control will not help lose any fatty tissue associated with Lipdema; it will only help lose weight caused by overeating.

As the Lipedema progresses, the patient’s condition can often become worse, depression can set it in, and due to obesity and pain, the patient becomes progressively less mobile.

Support

Support for women with Lipedema is lacking in this country. Even though Lipedema was first formally identified in the U.S. at the Mayo Clinic in 1940, most physicians are not readily familiar with the disorder.  Patients with Lipedema are likewise at a loss to get help. Generally, these patients are simply diagnosed as ‘obese’; Lipedema is often confused with obesity. Many women who are obese may actually have Lipedema instead of or in addition to obesity. Lipedema is more likely to be diagnosed in Europe. (The European spelling may vary from the United States: “Lipoedema “or sometimes, “Lipodema”.)

Currently, support for patients in the United States can be found through online support groups and the rare informed physician.

Treatments

There is no cure for Lipedema and at this time there is no effective treatment for Lipedema. Early weight and diet control may prove to be helpful. If Lipedema can be detected early on, it may be controlled somewhat by strict proper diet control and maintaining a good weight. These good habits may possibly prevent the lower body from enlarging as much as it would if the patient becomes obese. Proper evaluation by an endocrinologist, and the treatment of endocrine imbalances, may help. While, there is no proven effective treatment for Lipedema, the swelling can be managed with Manual Lymphatic Drainage if done by a qualified therapist.  Custom-made compression garments can further help reduce the swelling and keep the fluid from returning- but these garments may not be well-tolerated by all patients.  Manual Lymphatic Drainage (MLD) can be especially helpful if Lymphedema is also present.

If the swelling progresses so that the ankles and feet are affected, a health professional may assume that the patient has primary Lymphedema. In fact, this ankle and foot swelling is due to secondary Lymphedema – the swelling is from damaged lymphatic flow due to the pressures caused by the Lipedema. This is known as Lipo-lymphedema. Lipo-lymphedema can also develop in combination with chronic venous insufficiency, and other vascular disorders. Lipedema and Lymphedema are not the same diseases at all, even though both involved enlargement of the legs. Lymphedema is a disorder of the lymphatic system. It may develop as Lipedema worsens due to pressure the accumulating fat puts on the lymph system. Lipedema is symmetrical, while Lymphedema typically only affects one limb. If there are associated endocrine problems, a consultation with an endocrinologist may help reduce some symptoms.  Warm gentle pool therapy can also be helpful and patients often enjoy the ease of movement in the water as well as the pain relief experienced while in the pool.

Liposuction as a treatment is very controversial. While it has helped some patients when done by a skilled surgeon knowledgeable about Lipedema, it is definitely not an option for everyone.  With liposuction there is a very real risk of further damaging the lymphatics, infection, poor and/or slow healing and increased swelling.  Gastric bypass (bariatric surgery) will not reduce the Lipedemic areas, but it may help ease some other medical issues (diabetes, etc) if the patient is also obese. Please also check out the Lymphedema section for other treatment options- particularly for when Lipedema and Lymphedema present together in the patient.

One of the main problems with Lipedema is that there are often secondary accompanying diseases which complicate the patient’s health.  Associated articular and venous diseases, lymphedema, obesity, and/or psychological/emotional disorders are often seen with Lipedema patients. The more diseases that present together, the worse is the prognosis of the Lipedema itself.

Research

Lipedema is under-researched in the United States. However, it is currently recognized, treated, and researched in Europe. The New York State Assembly recently introduced Bill A05321 which exists to seek funds to research all lymphatic disease including Lipedema. To prevent and delay Lipedema, it is imperative for medical personnel to learn to recognize it as early as possible and to treat it professionally with appropriate patient follow-up.

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