Feb 24, 2008

The Lymphadema / Lipedema Connection

Many people who suffer from lymphadema may also have a condition called "lipedema" which is deifined in Wikipedia as "a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the anorexic to the morbidly obese; 3) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 4) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. Even if the number were only 5%, that would mean more than 6 million women in the United States alone."

The Wikipedia article also goes on to state that "Patients tend to gain weight in lipedemic areas and lose it in non-lipedemic areas. Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up. Even anorexic women can starve and exercise away "normal" fat but retain lipedemic fat.

The classic early-stage lipedemic profile is a woman who looks like a size 8 from the waist up and a size 16 from the waist down with disproportionately large, column-like legs. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Many lipedema patients cannot tolerate the compression garments associated with conventional lymphedema treatment because the underlying lipedemic fat is very painful, and those patients therefore are at risk for the side effects of uncontrolled lymphedema, including recurring blood infections and fibrosis.

Women with lipedema also are at very high risk for obesity because the lipedemic fat cannot be lost, and because as the condition worsens, patients become progressively less mobile."

Many people who suffer from lipedema may not realize that they have this condition. It is also difficult to get a diagnosis from a medical doctor, as they may not be aware what this condition is, or have little knowlege of it. If you think you have this problem, it might be best to seek out a lymphedema specialist who can help you with diagnosis and treatment options.

The following is an interesting article that ran last summer in the Victoria Times:

Being seriously overweight can be depressing, emotionally upsetting and socially stressful.

It can hurt, too, when a person suffers from a condition called lipedema, also known as painful fat syndrome.

"Lipedema is not related to overeating," stresses Robert Harris, director of this city's Dr. Vodder School, and an expert in fluid retention and acute swelling.

"People can starve themselves, have surgery, take slimming pills and nothing helps," he says of the chronic condition that occurs in females almost exclusively. It is characterized by symmetrical fatty-tissue buildup and swelling, from hips to lower legs.

The syndrome was first identified in 1940 and since then has mostly been studied and written about in Europe, says Harris, whose school is teaching ways to reduce this edema (swelling) through massage and application of strong elastic bandages or garments -- a therapy that began in Germany.

"It is seriously underdiagnosed in North America, but starting to be recognized."

The cause is unclear, and there is no cure for the condition that experts say affects at least one in 2,000. Researchers believe it might be genetically linked, however, with a connection to hormones, microcirculation and inflammation. Harris adds it is different from lymphedema, the swelling complication that can result from cancer surgery, radiation and damage to lymph nodes.

"I have a very deep, achy feeling in my legs," says a 28-year-old Victoria woman who asks not to be identified, but has suffered from severely swollen lower limbs since age 12. "My mother had it, too. I can't stand too long, and it's very sore if someone bumps me or touches my legs."

For years she tried all kinds of slimming programs but to no avail. Then a year ago she was diagnosed with lipedema and discovered the massage therapy that is helping reduce both pain and swelling.

Three world authorities in lipedema management and treatment are in Victoria this week, offering workshops through the Dr. Vodder School to about 50 massage therapists, physiotherapists and health professionals from around North America. On Sunday morning, anyone with the condition can attend a free session at St. Margaret's School auditorium, 1080 Lucas Ave. (For health professionals the cost is $25.)

It starts at 8:30 a.m. with research updates by Dr. Horst Weissleder, professor of radiology at the University of Freiburg, Germany. He has published more than 200 articles about radiology, nuclear medicine and lymphology in international medical journals, and co-authored Lymphedema Diagnosis and Therapy.

After his talk, Angela Vollmer, an expert in fitting compression garments, will discuss lipedema and compression garments.

"This is a very painful condition, and people can diet, diet, diet and it doesn't help," she explains. "Why? Because it is an illness, and not caused by excess calorie consumption. These people need lymph drainage treatment (massage) to remove excess liquid, and compression hose -- either Bermuda or Capri length stockings -- to keep the swelling down. With this treatment they don't see a great reduction in volume, but there is a great decrease in pain and improved quality of life."

The buildup of lymphatic liquid is what creates the pressure and pain, and garments, made of flat-knit material, should be used for compression.

"These new garments do not constrict circulation and distribute even pressure to a large surface.

The wide weave allows air to flow, which makes daily wear more bearable for the patient and there is micromassage through movement, which supports the decongestive therapy," she says.

In recent years, she says, German experts have also developed new liposuction techniques to help dissolve fatty tissue, "and very fine needles to take out the liquid quite easily."

Author Grania Litwin © Times Colonist (Victoria) 2006

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