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Lipedema

On a positive note, there are ways to get a handle on the pain, confront and deal with the issues of depression, poor self-image, public opinion of obesity, and informing family of the genetics and family history.  Each person deals with the diagnosis in their own way, and many look for support in others. If you are looking for more support, please join the Lady Frog's Chat Room or log into the Lady Frog's Blog

Lipedema, as described to me by my doctor is a chronic, inucruable condition.  It is a disease of the lipid metabolism which results in a symmetrical impairment of fatty tissue distribution and storage.  It is combined with an abnormal "fat cell".  It is also known as "Painful Fat Syndrome".

According to research, the abnormal distribution of these fat cells is usually found between the waist and the ankles.  However, it will sometimes appear in the arms also.  There isn't a known cause of lipeodema, but there also has been very little research done on this disorder.

Here are some clinical findings according to Surgical Clinics of North America: Volume 83, Number 3, June 2003 (Copyright 2003 W.B. Saunders Co -  This review was written by John M Macdonald, MD, FACS; Nancy Sims, RN,LMT, CLT-LANA; and, Harvey N Mayrovitz, PhD):

• Females almost exclusively
• Develops during puberty
• Heavy hips and thighs most common
• Swelling ends at ankles
• Palpation usually painful
• May be associated with lymphedema
• Cellulitis infrequent
• Symmetric
• Stemmer sign negative
• Frequent black and blue marks

Another very interesting bit of information about lipedema found in the above study is that 20% of the patients diagnosed with lipedema reported a positive family history.

In 1940, doctor's Allen and Hines first described this symetrical swelling of the legs by calling it a deposit of subcutaneous adipose tissue (fatty tissue).  Some researchers will call these deposits fatty tumors.  At this time, there is no effective medical treatment for this disorder. 

Most of the research found on the Internet seemed to be repetitive.  Basically, the research is limited due to lack of funding.  As one blogger explained, "Lipedema is at the bottom of the barrel when it comes to funding."  Because Lipedema is considered is often diagnosed as Lymphedema, most of the studies and research includes lipedema in an effort to differentiate the two.

There are two types of lipedema.  Type one and type two.  The best explaination is as follows:

"In Stage I, the skin is still soft and regular, but nodular changes can be felt upon palpation. There are no color changes in the skin and the subcutaneous tissues have a spongy feel, like a soft rubber doll. In Stage II, the subcutaneous tissue becomes more nodular and tough. Large fatty lobules begin to form on the medial distal and proximal thigh and medial and lateral ankles just above the malleoli. Pitting edema is common, increasing as the day progresses. The individual may report hypersensitivity over the anterior tibial (shin) area. Skin color changes occur in the lower leg, indicative of secondary lymphedema, which often occurs in later stage lipedema." (http://www.lymphedema-therapy.com/Lipedema.htm)

Probably one of the most enlightening pieces of information that I've found is the following, which is quoted from lymphodemapeople.com:

All of these patients present with a variety of these problems ranging from lack of self-confidence to lack of confidence in their medical or health workers, often because of misdiagnosis and lack of sympathy, and then to real depression and anxiety and because of their appearance and the lack of understanding of the condition, particularly as their mobility decreases. The whole problem, of course, becomes worse if the onset of lymphoedema further exacerbates the condition.

They are "blamed" for being overweight, told they eat too much or are "cheating" on their prescribed diets. If they are hospitalised for a weight loss program when the situation becomes very serious and they don't lose weight, they are often met by the comment "I am surprised" by their health care professionals and are summarily dismissed as "patients for whom nothing can be done" or "we don't know what is wrong with you" or "you'll just have to live with it". This is not helpful to the patient who should be made aware that the condition is a genetic abnormality and that their obesity is not their fault. Of course, up to a point dieting can help but it will never cure this condition. They obviously, and for good reason, become discouraged and dismayed by their problems, which seem not even to be recognised. When lymphoedema occurs on top of the lipoedema this is a situation which is almost a problem that is so great for them (and again often undiagnosed as such) that they need to be very strong people to cope with it. Sadly, many are not able to do this. Psychological counselling can be helpful; for this poorly understood condition it is seldom offered. Invalid Pensions are not the answer for those that have, until they could not, lead an active and productive life. In many centres in Australia and I am sure worldwide, these patients are turned away from treatment centres (for lymphoedema) as untreatable cases. In some cases they resort to surgery in a final effort to improve their condition. The result of some of these operations (including liposuction and limb reduction) are so appalling that they have to be seen to be believed. (http://www.lymphedemapeople.com/thesite/lymphedema_lipodema.htm)

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