Here you will find out everything that you ought to know about lipoedema: _What is lipoedema? _What can I do about it? _How does it make its presence felt? _What are the most frequent symptoms? _What therapy methods are available? _What should the affected patient be aware of?
What is Lipodema
Lipodema is a medical condition that is often confused with lymphedema. The individual with this condition may appear to be simply obese and/or to have extremely swollen legs and swollen abdomen. The condition is an uneven distribution of fat cells in the sub-cutaneous regions generally in the legs or abdomen. One major frustration of people with lipodema is that they are accused of being simply "fat," which is absolutely not the case.
Etiology/ Cause: Unknown
Lipedema seems to affect all races
The term lipedema was first used by Allen and Hines (1940) to describe a symmetrical "swelling" of both legs, extending from the hips to_ the ankles, caused by deposits of subcutaneous adipose (fatty) tissue. The underlying etiology of these fat deposits remains unknown. _While lipedema is not a disorder of the lymphatic system per se, it is frequently confused with bilateral lower extremity lymphedema. _It occurs almost exclusively in women and may have an associated family history (20 per cent of cases) and is usually accompanied _by hormonal disorders as well (Strossenreuther, 1999). If present in a man, it is accompanied by massive hormonal disorder. _Fat in the lower extremities extends to the malleoli (ankle bones), often with flaps of tissue hanging over the foot. The feet are not affected; occasionally, lipedema is found in the arms. Typically, there are also fatty bulges in the medial proximal thigh and the medial distal thigh, _just above the knee. Clinically, the affected individuals complain of pitting edema as the day progresses, which is relieved by prolonged _elevation of the leg(s) overnight (Rank and Wong, 1966; Rudkin and Miller, 1994; Casley-Smith, 1997).
Frequent symptoms_Lipoedema leads secondarily to a chronic lymph blockage. The fat lobules and fat cells are anchored in the connective tissue where they are surrounded by very small lymphatic and blood vessels. An increase in the fat cells gradually results in the finest lymphatic vessels being pressed shut. In addition, oestrogens (female sex hormones) cause an increase in the storage of fluid in the connective tissue and a loosening of this tissue._One side-effect of lipoedema is therefore a chronic lymph blockage in the dependent parts of the body and the storage of fluid in a very loose connective tissue. This explains the pains that regularly occur.
Feeling of heaviness in the legs_This is caused by the weight of the increased adipose tissue and the amount of accumulated tissue fluid.
Swollen legs (orthostatic syndrome)_It is mostly during long periods of standing and/or sitting that the accumulation of fluids in the legs increases. The result is a swelling, frequently accompanied by a tendency to swell in the (otherwise not affected) feet. People affected by this often say that they have trouble putting their shoes on in the afternoon.
Orange skin phenomenon and cellulitis_Caused by the special structure of the connective tissue and the loosening of this tissue.
Increase in the occurrence of bruises (haematomas) in the affected parts of the body (even at the slightest inducement)_The reasons for this are:- pressure on the blood-vessels by the fat cells; a lack of anchoring of the small capillaries in the connective tissue, which results in them tearing when affected by the pull of gravity.
Considerable pain in the legs; painful sensitivity to touch_The continued development (chronification) of the lymph blockage leads to a hardening of the tissue (induration), which can be extremely sensitive to touch and very painful.
Early occurrence of degenerative changes in the joints and arthroses_Especially in the knee (because of wrongly placed stress and excess weight).
Stages of lymphatic oedema_Lymphatic oedema, which appears secondarily in lipoedema, i.e. as the consequence of the increase of adipose tissue, is frequently divided up into 4 degrees of severity in medical literature.:
STAGES of Lipedema
Stage I_Can be depressed, and is spontaneously reversible. Is apparent after physical strain or at the end of the day, and has gone again after a night's rest. In Stage I, the skin is still soft and regular, but nodular changes can be felt upon palpation. There are no changes in the skin and the subcutaneous tissues have a spongy feel, like a soft rubber doll.
Stage II_Can be depressed, and is reversible after treatment. Complications such as eczema and erysipelas frequent. Without therapy is less severe in the morning, but is still detectable. 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 (see photo 2). 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.
Stage III_Connective tissue hardened (fibrosclerosis), cannot be depressed. Can only be improved, but even after therapy damage to the connective tissue still present.
Stage IV_Irreversible oedema, elephantiasis; complications up to malignant degeneration (Lipolymphedema). Some people say that stage 3 en 4 is the same.
Presence of superficial varicose veins_Of the blood that is pumped by the heart along the arteries to the legs right down to the big toe, 90 % is transported back to the heart in the veins. However, nothing can flow of its own accord against the pull of gravity, i.e. upwards. The blood must be pumped upwards actively. This is done with every movement of the legs, with every stride. That is why there are flaps in the big veins at short intervals. The venous flaps work in the same way as a valve and only allow the blood to flow upwards. These flaps frequently get damaged or even destroyed in the event of a thrombosis. In a genetic weakness of the connective tissue the veins frequently stretch in the course of years or decades to such an extent that the venous flaps can no longer close and the blood flows back into the leg again. This is helped by factors such as professions involving sitting or standing, pregnancy, hormone treatment, extreme overweight, and heavy physical labour (especially in a hot environment). The veins which expand because of this are called “varicose veins”.
Damage to the deep-lying venous system_It can however also affect the deep-lying venous system, which is as a whole much more important for the circulation and whose transport capacity is four times as great as that of the superficial system. Because of the pressure of the column of blood in the varicose veins or in the deep-lying veins, fluid and/or solid substances are passed into the tissue (“interstitial space”). This fluid is usually transported back to the heart along the lymphatic vessels. The remaining 10 % is filtered off in the system of the capillaries as an albumin-enriched clear liquid which is called lymph.__Because of the increase in the weight of the lymphatic fluid an even greater strain is placed on the transport capacity of the lymphatic vessels, which are already being pressed shut, and they swell. For this reason a phlebological examination of the venous system must also be performed as a matter of course in patients with lipoedema, since varicose veins can be both avoided and also well treated.
Great physical strain_An increase in the weight of the lymphatic fluid can also occur as the result of too much physical activity. Here, of course, the limits vary according to the individual. With the increase in the demand for oxygen and energy by the muscular system of the legs during generally unusual physical exertion, the heart has to pump more blood into the leg per time unit, and the cardiac output rises. 10% of this accumulates in principle as lymphatic fluid; because of this the strain on the lymphatic system is increased. Some patients report an increase of the pains after stimulating drinks such as coffee, coke, tea, wine, or sparkling wine. Caffeine and alcohol stimulate the microcirculation in the capillaries, thus causing an increase in the demands on the lymphatic system.
First complication_Of all the possible complications, the ones to be named first and foremost are the diseases caused by wear and tear of the joints (preferably of the lumbar vertebrae and of the pelvic, knee, and foot joints).
Second complication_A second complication is the development of lymphatic oedemas. Especially in stage III of the lipoedema there is a disorder of the lymphatic flow which is due to the increasing stenosis of the lymphatic vessels by the sudden growth of the adipose tissue. At a more advanced stage of the disease large-sized lymphatic oedemas can occur in addition to lipoedema. In contrast to pure lymphatic oedemas, which usually bear different characteristics on both sides, the development of a lymphatic oedema in the course of a lipoedema disease is always symmetrical.
Third complication_Increase in weight! In particular - as stated at the beginning - psychically depressive factors can frequently cause an increase in weight in lipoedema. Because of this the risk of additional complications, such as diseases caused by wear and tear of the joints or the development of a lymphatic oedema, is dramatically increased.
Big Complication:_Perhaps one of the most critical complication is the acquisition of secondary lymphedema. The increased weight can crush the lymphatics causing blockages and hindrances to lymphatic flow. Another complication is deterioration of the joints and vertebrae from the excessive weight. Other complications may include varicose veins and/or the deep venous system. Many lipodema patients also experience a tremendous amount of pain due to the condition and the affects on the body's systems. Other complications may include "pins and needles" discomfort, decreased vascular flow in the affected limbs and a decreased skin temperature in the affected limbs.
Treatment possibilities are restricted _
1. Diets and fasting_Lipoedema is not caused by nutrition, and therefore can not be influenced by diets or fasting! Patients frequently suffer from a severe loss of their self-esteem. Only too often they are told that their disease is the result of the wrong nutrition. They hear this not only from their family and their private/professional sphere, but unfortunately also from inexpert paediatricians and general practitioners. Because of this massive external influence, many people genuinely believe in the end that the symptoms are the result of the wrong nutrition and start their first cutting-down diets.__However, the weight reduction achieved by this has no influence at all on the leg circumference. Besides which, a diet makes the organism change over to low-flame, so that the subsequent “normal” eating habits, when resumed, lead to a sudden increase in weight (usually in the legs first of all!).__Nutritional disorders are however frequently a side-effect of lipoedema. At the latest when the legs become sensitive to touch, and pain and haematomas occur on every touch, the sex-life is impaired to a very great extent. One result of this is that the affected people often look for a substitute satisfaction, frequently in an excessive food intake. In many instances this results in a nutritional disorder that needs to be treated. Here a stay in a hospital specialising in lymphatic disorders gives the patients the opportunity to get back to normal eating habits again. _
2. Medicinal treatment_Lipoedema cannot be influenced or healed with medicines (neither by pills nor by creams)!_
3. Sports_The ideal sport to go in for with lipoedema is swimming. Here the muscular activity takes place in a horizontal position, so that there is no danger of the threat of an oedema which occurs when the body is upright (orthostatical syndrome). Cycling is also good for you. Gymnastics, going for walks, and light jogging can also be recommended. _
4. Cosmetic corrections_Liposuction (suction of the fat) is a method of treatment that is frequently applied. It must be admitted that in the past no improvement was observed in a few instances. If the lymphatic vessels are damaged during the procedure the result can even be a deterioration. Before you decide to have liposuction you should get someone to tell you about all the side-effects, the expense it involves, and the long-term results of this method. PLEASE Consult several doctors!_
5. Lymph drainage and compression treatment_The only recognised and highly effective method of treatment is the combination of manual lymph drainage and compression treatment. Hereby the lymphatic vessels are opened by means of a special massage technique. In the course of one session of e.g. 45 minutes approximately 500 ml of lymph and water are moved out of each leg in the all-round treatment. In order to make the effect last longer, both lymph and blood have to be pressed into the lower-lying larger veins or lymph collectors._In addition the provision with medical compression stockings or tights is absolutely essential._In lipoedema the legs are often beyond every standard size, so that made-to-measure stockings in high compression classes are necessary. Intermittent compression treatment with apparatus containing several chambers seems to have a favourable effect on lipoedema and is necessary as an additional therapy when the amount of manual lymph drainage (MLD) cannot be increased.
Treatment as an out-patient or an in-patient?_
People with Stage I lipoedema are normally treated as out-patients. From Stage II onwards treatment in hospital must be taken into consideration at least as an initial measure. There are several reasons for this:
__1. The disease needs continuous treatment. If it is interrupted or discontinued the findings and the pains will deteriorate more or less quickly. The suffering is constitutional; there is therefore not one cause which can be resisted therapeutically.
__2. The patients, who are very often young, have to be convinced of the necessity of wearing compression tights consistently. It is natural that this will be more likely to succeed when an effect is visible. Treatment as an out-patient certainly produces a clear reduction in the pains in many instances, but not, however, an appreciable reduction in the circumference of the legs.
__3. In most instances the patients have a very disturbed feeling of self-esteem (the younger they are, the more frequently). It is often a help for them to be in a group with fellow-sufferers who are faced with the same problems and with whom they can exchange stories of their experiences. After having been to a hospital specialising in lymphatic disorders many women seem to be internally transformed and have a positive attitude to their lives again.
__4. From Stage II onwards an effective de-blockage, which accompanies a measurable reduction of the circumference and volume (approx. 1 - 1.5 litres per leg or 5 - 12 cm less on the upper leg), can no longer be achieved in by a lymphatic therapist working outside a hospital because of the amount of time needed for this.
In-patient treatment in a hospital specialising in lymphatic disorders.
Optimal treatment, such as can only be performed in a hospital specialising in lymphatic disorders, looks like this:
__1. Manual lymph drainage in the morning and in the evening as a total treatment for the duration of at least 45 mins., with simultaneous breathing exercises and anti-blockage exercise-movements.
__2. Subsequent bandaging of the legs with special foam rubber, textile-elastic short stretch bandages.
__3. If necessary intermittent compression for 30 - 60 minutes (if necessary twice a day).
There are in addition supportive measures such as:
_- advice on nutrition
_- reduction and wholesome diets
_- pain therapy_- bicycle ergometer training
_- long walks_- psychological counselling__
Female patients are occupied with this therapy all day long. It is only through these intensive measures that appreciable reductions in the circumference can be achieved. During the first two weeks the success of the treatment is relatively small. In most cases the greatest progress is to be expected after approximately 4 weeks. In severe forms with the second stage of lymphatic oedema it may be necessary to carry on the treatment for longer.
During the day_- Do special anti-blockage gymnastic exercises in compression stockings - if prescribed by the doctor.
During the night_- If prescribed - put a bandage on the affected extremity after careful skin-care!_- Put the affected arms or legs up! (If necessary raise the end of the bed).
Holidays - Avoid tropical regions (heat, insects)! Take antibiotics with you in case of emergency. Your doctor will tell you the dosage).
_- On long journeys have breaks so that you can do gymnastic exercises (in the aeroplane, if possible, get up and walk about_ again and again: do rocking movements with your feet).
_- No kneading massage
_- No fango packs in the oedematous area
_- No deep-heat-producing electrotherapy
_- No overstretching remedial gymnastics!
_- Do not measure your blood-pressure on the affected arm.
_- Do not allow any phlebography or direct lymphography to be performed on the swollen limb
_- Do not accept manual lymph drainage as an isolated therapy (Compression treatment is absolutely essential!) In manual lymph drainage the affected quarter of the body or the entire body must always be lymph-drained.
Go to a doctor immediately if …
_- pains occur and/or the muscle-power diminishes.
_- the swelling deteriorates in spite of adequate treatment.
_- inflammation of the legs occurs with pain, redness, marks, or shivering fits (erysipelas = erysipelas infection).
_- Keep to your optimal weight or, if you are overweight, try and get back to it by eating healthy
_ food and exercise!
_- Make sure you have a balanced diet! Eat a lot of vitamins! Avoid sugar, sweets, and things made_ with white flour (cake, biscuits, etc.)
_- Restrict the amount of salt you eat. Drink when you are thirsty; in other words, you may drink as much as you want (no sugar added drinks and up to two litres a day).
_Avoid injuries (thorns, prickles, tools).
_Avoid at all events being bitten, or scratched by a cat.
Subsequent out-patient treatment
After having provided the patient with compression stockings a consistent permanent continuation of this treatment must take place at home:_Manual lymph drainage once to twice a week, the permanent wearing of compression tights, and, if these measures are not sufficient, the additional prescription of an apparatus for mechanical intermittent compression by the general practitioner in charge or a phlebologist. These measures serve to ensure the success of the treatment in the hospital specialising in lymphatic disorders.
In many cases this may be sufficient. Frequently, however, the situation occurs where, in spite of good coordination with the patient and the raising of the weekly lymph drainage, extra hours in the “lymphomat”, and if necessary also a rise in the compression by means of stronger and/or additional compression stockings, an improvement is not achieved, but instead a continuous deterioration occurs. This can make itself manifest in the form of an insidious increase in the circumference and/or an increase in the blockage problems/pains.__If this happens in spite of an open-minded and active cooperation in the therapy on the part of the patient, i.e. if there can be no question of compliance problems as the explanation for this, another in-patient stay in a hospital specialising in lymphatic disorders cannot be avoided. And over the course of the years additional in-patient treatment will have to be considered when the possibilities of out-patient treatment in that place have been exhausted.
What the female patient should be aware of: at home and at work:
_Avoid injuries, strain, extreme temperatures (heat and cold)!
_Skirts, trousers, and belts must not exert pressure - free breathing is important!
Cosmetics and body-care
_- When caring for your nails do not cut into the nail wall!_- Do not use cosmetics that irritate your skin!_- Do not use alkaline soap; use a soap with an acid pH value - the acid protection layer of your skin must not be damaged. Your skin must not be dry or cracked.
_- Take care in the sauna! It can be harmful, but may not be.
_- Take care when sun-bathing! You must at all events protect your skin from sunburn!_- Avoid kneading massage of your leg and the lower backside of the same side!
_In general, going in for sports is advantageous. The de-blocking effect of sporting activities is increased even more if you wear compression stockings.
_- Get your doctor to fit you out with compression stockings from the range of the well-known Bavarian manufacturer Juzo. With the SkinProtect® procedure specially developed by Juzo the fine mesh becomes extraordinarily pervious to air and moisture and is therefore pleasant to wear.
_- No sudden movements of the swollen extremity (take care in sports such as tennis, squash, football etc.)_- Do not get frostbite if you go in for winter sports!
_- Do not risk getting injured! (Choose cross-country skiing in preference to alpine; gentle swimming is one of the therapeutic methods).
There is no known "cure" for lipodema. Because it is not a medical condition caused by over-eating and improper nutrition habits, diets will not a much of an effect. Neither can the condition be treated with medicines or diuretics.
Treatments that have helped include massage therapy in conjunction with compression bandages, benzopyrones, which includes the use of coumarin. Liposuction has also been used, but the long term success is still open to debate.
Lipodema or Lymphedema??_The signs of lipodema are distinctly differant from lymphedema. First, swelling does not extend to the feet, but extends from the abdomen to the ankle. Second, the limb texture is rubbery not hard. Third, pitting edema is not present. Fourth, Stemmer's sign is negative and finally infections that plague lymphedema patients are generally not a problem with lipodema. The reason for this is that lipodema is not caused by a malformed or damaged lymphatic system.
NOTE: Lipoedema and lipo-lymphedema can also occur in the arms and chest. Normally, abdominal and thigh deposits will also be evident when this occurs. However, this is not always the case.
30 may 2005 LYMPHATIC DISTURBANCES IN LIPOEDEMA_Prof P.S. Mortimer, London, UK
Van Geest A.J., Esten S.C.A.M., Cambier J-P.R.A., et al. Phlebologie. 2003;32:138-142.__
ABSTRACT _This study by Geest and colleagues investigates possible lymphatic abnormalities in lipedema. Standard web space lymphoscintigraphy was performed in lower limbs of patients with lipedema (n=22), and “typus rusticanus” (n=6) and controls (n=7). Their controls were not normal subjects but patients with venous insufficiency (Widmer stage II). What was original in this study was repeat lymphoscintigraphy using an identical protocol but with the injection depot administered in the subcutaneous fat of each leg, and therefore within the lipedema tissue (liposcintigraphy). Both qualitative (image assessment) and semiquantitative (speed of lymph transport) measures were recorded for analysis. The results showed no differences from the venous controls, but, somewhat surprisingly, lymph transport was faster in the lipedema group than in the “typus rusticanus” when studied by liposcintigraphy. Their conclusion was that epifascial lymph drainage in lipedema is not disturbed.__
COMMENTARY_This study is welcome because lipedema is underdiagnosed and under-researched. Sufferers feel let down by the medical profession, particularly when dismissed as simply obese. In our experience, lipedema is undoubtedly a medical entity distinct from obesity, and almost certainly genetic in origin, given the strong dominant line of inheritance we see through the female side of families.__I am sure the authors were surprised not to see any lymphatic disturbances from the liposcintigraphy. I would have hypothesized abnormalities existed, given the frequent progression of lipedema to lymphedema (so called lipo-lymphedema or lipedema-lymphedema syndrome). It was difficult to follow clearly their quantitative measures. In the methods section the authors refer to two outcome measures: 1) Transport-Index (Ti) and 2) ilioinguinal radioactivity after 45 mins and 2 hours, but in the table of results I cannot see any reference to Ti._The inclusion of “typus rusticanus” is interesting but I am sure that, like me, a number of readers will be thinking, what exactly is this condition? Is it a localized form of lipedema or simply fat pads over which the skin becomes cold and blue (perniotic - like chilblains)? Do we consider this group “fat normals” or a variant of lipedema, an important distinction for interpreting the results correctly?”_In summary, an important study which raises the profile of lipedema, a neglected but important condition in women. Unfortunately, the results do not tell us much more than we already knew, which is not a lot. Patient advocacy is increasing (email@example.com) and hopefully with greater interest in, and funding of, research into the science of fat and adiposity, better understanding of lipedema will follow soon.
An Interview with Rebecca Morris of the National Lipedema Association_Rebecca Morris, the founding president of the National Lipedema Association (NLA), graciously agreed to an e-mail interview to share information about lipedema and the NLA._What is lipedema? _Rebecca: Although lipedema was first identified in the United States, at the Mayo Clinic in 1940, it is not well known in this country and it is often confused with obesity or lymphedema. Patients typically are either misdiagnosed or not diagnosed at all, and most never receive appropriate medical treatment. Lipedema is a bilateral, symmetrical deposit and swelling of adipose tissue in the lower extremities following a particular pattern, from the waist to a very distinct line above the ankles; the feet and ankles are not normally affected unless lymphedema also is present. In addition to this unusual pattern, lipedema is distinctive in four ways: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it occurs in women of all sizes, from the anorexic to the very obese; and 4) lipedemic fat generally is not mobilized by diet and exercise._Can those with lipedema diet and exercise to get rid of the excess fat? _Rebecca: People with lipedema, even anorexics, can diet and exercise away their "normal" fat but they retain the lipedemic fat. Obese lipedema patients who undergo bariatric surgery lose their weight almost entirely from the waist up. Patients tend to gain fat in the lipedemic areas and lose it only in the non-lipedemic areas. As a result, the classic lipedemic profile, in the early stages, is a woman who looks like a size 8 from the waist up and size 16 from the waist down, with disproportionately large, column-like legs.Lipedema typically presents first at puberty, is often progressive, and can be triggered or worsen during pregnancy or at menopause. In its later stages, as the patient's lower body enlarges, lipedema can contribute to secondary lymphedema, develop in the arms and abdomen, and put patients at risk for obesity as well as other diseases and symptoms associated with increasing immobility._How is lipedema diagnosed?_Rebecca: A lipedema diagnosis is based primarily on clinical presentation and medical history. Unfortunately, we do not yet have genetic or other markers for lipedema. In some cases, lymphoscintigraphy images of the lymphatic vessels show a flame-like pattern different from that found in lymphedema._Do you have any estimates as to how many women are affected by lipedema? _Rebecca: Estimates are imprecise and vary widely, but many researchers and clinicians believe that a significant number of women currently classified as obese in fact have lipedema, either instead of, or in addition to, obesity._Where does lymphedema come into the picture with lipedema?_Rebecca: As fat cells are deposited and expand, they interfere with the pathways of lymphatic vessels. This inhibits the flow of lymphatic fluid and patients can develop secondary lymphedema, usually in the lower legs. This condition is known as lipo-lymphedema. At this point, the lymphedema can cause swelling in the feet and ankles._How is lipedema treated? _Rebecca: Treatment includes Manual Lymphatic Drainage (MLD), bandaging, compression, and self-care. These components of treatment can help reduce any edema in the tissues and, in some cases, can reduce the pain associated with lipedemic fat (lipedema also is known as “painful fat syndrome”). In addition, some researchers believe that over a significant period of time, the pressure of compression will help to shrink the size, although not the number, of fat cells._For patients who also have secondary lymphedema, this treatment can help reduce the fluid volume associated with the lymphedema component. _Compression can be very problematic for many lipedema patients because of the underlying pain, and because the unusual shape of lipedemic legs means that compression garments often cause tourniquet effects at the ankles, knees and thighs. Many lipedema patients are unable to tolerate compression at all. As a result, if they also have lymphedema, they are more at risk for the side effects of uncontrolled lymphedema, including recurring cellulitis and fibrosis._What is your goal in founding the National Lipedema Association? _Rebecca: The mission of the NLA is to educate medical providers and patients about lipedema, and to promote and support research that benefits people with lipedema. Because lipedema is not well known, we want to educate doctors, nurses, and other medical providers so that they can properly diagnose lipedema and refer patients for appropriate treatment. We are working on new compression options specifically for lipedema, so that therapists have more tools for treating lipedema patients. We are working with lipedema researchers to identify appropriate patients for studies and generally to facilitate their work. We will promote lipedema research specifically, and more generally research in lymphatic and metabolic disorders that ultimately will benefit lipedema patients. _Our web site at www.lipedema.org will launch in the next few months, and will include educational materials and news about lipedema, a medical literature database, patient and medical provider registries, and links to resources for clinicians, therapists and patients._How can those who are interested become active in the National Lipedema Association?_Rebecca: You can contact us by e-mail at firstname.lastname@example.org to join our mailing list. Please tell us if you have particular needs, and we will try to connect you with the right resources.If you are a doctor or therapist having difficulty treating a patient, we will refer you to information sources and/or refer you to other providers who have had similar problems. Please also tell your patients about the NLA._What kind of help would be most valuable to the NLA and its members?_Rebecca: If you are a patient and other members of your family also have lipedema, please let us know; you may be a candidate to participate in one of the ongoing research studies. We need volunteers to help with a wide array of projects, and we'd love to hear from you about your interests.And finally, of course, we need money to help fuel our dream of finding treatments and eventually a cure for lipedema. All donations are tax-exempt._The National Lipedema Association mailing address is 27 Freeman Street, Arlington, MA 02474. Rebecca can be reached by e-mail at email@example.com _Note: To learn more about how lipedema and lymphedema compare, see Lipedema and Lymphedema Compared.
Arikel: Weight Gain May Not Be Obesity in Women by HealthNewsDigest.com
An obesity epidemic continues to sweep the country and efforts are increasing to fight the growing number of people affected. Health care providers have consistently endorsed healthy eating and regular exercise as a way to combat obesity and weight gain. But for a significant number of women across the country, dieting and exercise will not make a difference. That's because they are not suffering from obesity. They have a lymphatic and metabolic disorder called lipedema. _Lipedema involves the extra deposit and expansion of fat cells in a distinct pattern on the body, usually from just below the waist to right above the ankles. In some cases, the arms and torso can be affected. A person with lipedema can appear quite skinny from the waist up, but obese from the waist down. The fat distribution occurs on both sides of the body in a similar fashion. Lipedema predominantly affects women. It can be inherited and can occur in women of any size.
“It is most likely a hormonal disturbance because men don't typically suffer from lipedema,” said Guenter Klose, a pioneering therapist who helped establish treatments in the United States for lymphatic diseases, especially lymphedema. Lymphedema is a swelling of a body part and the result of abnormal accumulation of lymph fluid. The condition can develop in untreated lipedema patients, and at that point the disease is known lipo-lymphedema. Based in Red Bank, N.J., Klose is a National Lipedema Association scientific advisory board member.
Lipedema typically manifests at puberty, but it can show up or worsen after a pregnancy, after gynecological surgery or at the start of menopause. As the disease progresses, patients with lipedema can experience a host of problems. Patients can experience painful swelling, bruising, infections, and fibrosis, which is the formation of scar-like tissue. Recognizing lipedema is not easy in the early stages, especially when patients are not obese. As the disease progresses and patients become larger, they are often labeled obese, going years without a proper diagnosis.
“I found out I had lipedema in much the same way that many lipedema patients do,” said Rebecca Morris, founder and president of the National Lipedema Association in Arlington, Mass. “I recognized the symptoms of lymphedema in my legs. In 2002, for the third time and at my insistence, I was referred for lymphedema therapy.”It was the therapist treating Morris' lymphedema who concluded she had had lipedema, an opinion later confirmed by physician specialist. Neither Morris nor her primary care physician knew what lipedema was.
Unlike the fat associated with obesity, lipedemic fat cannot be exercised away. In addition, this fat tissue does not respond or reduce with diet, Klose said. As a result, undiagnosed patients end up frustrated and confused. There is currently no cure for lipedema and the limited treatments available focus on alleviating symptoms. Compression garments and manual lymphatic drainage can help reduce pressure sensitivity.The results are gradual and it requires a lot of patience and dedication to the program by the patient.The National Lipedema Association is working to improve care for the condition by promoting research, as well as better recognition of the condition by both health care professionals and patients.
How does lipoedema characteristic differ from lymphoedema?
What is lipoedema? Allan and Hines first described Lipoedema in 1940 as a bilateral enlargement of the legs thought to be due to abnormal deposition of subcutaneous fat and the accumulation of fluid in the lower legs. They also classified it as 'painful fat syndrome'. It was not until 1949 that Wold et al would define diagnostic criteria for lipoedema that included bilateral, symmetrical leg swelling excluding the feet, which remain normal in size; minimal pitting oedema; pain and bruising in the swollen areas and large legs, thighs and buttocks despite dieting. In addition, the condition occurs almost exclusively in females and is normally first noticed at puberty or pregnancy. _Unfortunately, lipoedema is often not diagnosed and can be mistaken for several conditions including lymphoedema or obesity. Lipoedema can manifest with both physical and psychological problems including: discomfort at sites of swelling, spontaneous bruising and tenderness as well as a hatred for the disproportionally large legs while Western culture values the perception of slender legs.
What is lymphoedema?
The function of the lymphatics is to clear protein and water from the tissues. Fluid accumulation can be due to the absence, damage to, or obstruction of lymphatic vessels affecting the transporting capacity of the system.When the fluid formation is increased to a point that it overwhelms the capacity of the lymphatics absorptive system, oedema (swelling) occurs. _Lymphoedema of the legs tends to occur after puberty (but can occur at any age) with foot and ankle swelling. It can affect both males and females. In the early stages of chronic (long-term) lymphoedema, the swelling can be reversible. Pitting of the skin is invariably present. Swelling can disappear after a night's rest, although not in established lymphoedema. Yet, if this swelling continues and is left untreated, it will continue to increase and the skin may become hardened, dry and scaly in appearance. _The increase in weight can cause joint problems, leading to a reduction in mobility and pain occurring in the affected limbs. As a result of the swelling and altered local immunity, cellulitis may occur. This manifests as hot, red skin that can break down because of blistering. The individual may become systemically unwell and experience flu-like symptoms. A prescribed course of antibiotics as soon as possible is required. If very unwell, the patient may require intravenous antibiotics in hospital.Multiple episodes of cellulitis can occur leading to treatment using long term prophylactic antibiotics.
To further explain lipoedema, it is necessary to compare this condition to lymphoedema. Lymphoedema is usually asymmetrical and can be either acquired (through injury to the limb or tumours) or congenital (hereditary). Lipoedema on the other hand, is seen as the symmetrical enlargement of both lower limbs, beginning at the ankle and extending proximally as far as the waist and appears to be hereditary. The table below further highlights the obvious differences.
Characteristic Lipoedema Lymphoedema
Sex females only males & females
Age of onset puberty (pregnancy/menopause) usually pubertal
Family history around 40% of cases around 20% of cases
(Harwood et al 1996) (Harwood et al 1996)
Obesity yes (not always) variable
Symmetry always symmetrical sometimes symmetrical
Swollen feet never usually
Skin consistency normal or thinner thicker & firmer
Pitting of skin usually absent always pits
Easy bruising often no increase
Pain & discomfort often infrequent
Tenderness often infrequent
Effect of dieting little effect on legs even loss from trunk & legs
The sparing of the feet causes a 'bracelet effect' at the ankle. Unlike lymphoedema, lipoedema does not appear to cause skin thickening. The individual will often complain of extreme aching and tenderness within the affected limbs, especially around the knees due to the extra weight. Pain may be much more of a feature than with lymphoedema.
How does lipoedema differ from obesity?
Body fat is made up of adipose tissue that is important as a store of energy. This fat can be mobilised quickly in response to metabolic demands. Obesity can be thought of as excess body fat. This can cause health problems including; high blood pressure and diabetes. If an obese individual attempts to diet, the weight will be lost uniformly from all over the body. Yet, an individual with lipoedema will lose weight preferentially from upper body and face. The reason for this at present is not known.
What causes the fluid retention to occur in lipoedema?
Whilst fluid retention appears to occur to a significant degree with lymphoedema, it has been recognised with lipoedema that in the early stages the oedema may be minimal but over time this will increase and an individual may present with lipoedema and lymphoedema. So both conditions may coexist.
Dieting and Exercise _This condition is often misdiagnosed and treatment also. Individuals are advised to diet and lose the excess weight. This can in the short-term, help if the individual is obese. If the individual is not overweight and just disproportionally large from the waist down, this can potentially lead to a state of anorexia. The individual will attempt to lose weight, unfortunately, due to the nature of the condition, the individual will remain large from the waist down, whilst losing the weight from the upper body and face. This can exacerbate the disproportionate nature of the condition, leading to increased feelings of depression and disturbed body image. And that can even lead to an eating disorder. _Exercise is essential not just for 'burning fat' but also for enhancing any 'sluggish' lymph drainage, which likely co-exists. The best exercise to undertake is water aerobics. This will support the joints whilst allowing resistance to occur which will increase your heart rate. If this is not appropriate then walking can be of benefit either on a treadmill or outside. However, this may put added stress onto already painful knee joints.
Diuretics _Alternatively, diuretics are prescribed, in the belief that the swelling is caused by fluid retention, but very little, if any, benefit will be gained.
Hosiery _Perhaps the most successful treatment currently available is the use of surgical support stockings in combination with movement and exercise. These stockings, whilst expensive, can usually be obtained via the GP. The benefits of stockings include; helping redefine the shape of the limb and encouraging improved venous and lymphatic drainage helping to prevent aching, providing exercise is pursued.
Diagnostic Tests _Lymphoscintigraphy can distinguish swelling due to lymphoedema from lipoedema. The test involves injecting a very small amount of radioactive material between the toes of the affected limbs. The radioactive tracer is monitored as it is taken up by the lymph glands. If the individual has lymphoedema, this test usually demonstrates that the lymphatic collecting channels are abnormal. In lipoedema, lymph drainage routes are patent and functional.
Liposuction _Liposuction is a commonly undertaken procedure for excess fat (and even in certain cases of lymphoedema). It is best used for localised areas and not over large regions such as a limb. The likelihood of achieving an even effect (liposculpture) is small and cosmetically there may be no improvement.
Treatment is still largely unavailable to many individuals with lipoedema, through a lack of understanding as to the causes of the condition. Research continues to play an important part in helping to find a cause. The Lipoedema Study Group is undertaking one such study at St George's Hospital Medical School in London. Through the use of blood samples given by individuals with lipoedema, this study aims to identify genes that can predispose an individual to develop lipoedema within their lifetime. Currently this study is in the early stages, but it is anticipated over the next few years enough families with one or more affected relatives will be located to provide the necessary blood samples for genetic analysis. Individuals can either be referred to the study by their GP or can contact Miss Pip Sharpe, Research Nurse. _It is hoped that the study will help to bring further awareness of lipoedema and help individuals with the condition to cope better both physically and psychologically with its effects. _Conclusion_ In conclusion, it has been shown how hard it is to make an accurate diagnosis of lipoedema. Often, individuals will present with a combination of signs and symptoms, which may overlap with lymphoedema, making a straightforward diagnosis very difficult. The key factor to come out of the research so far has been that individuals with a diagnosis of lipoedema need to have both physical and psychological support to help them overcome the mental anguish, which accompanies the abnormally large limbs. These individuals need to know that they are not 'going mad' and that they are not primarily obese, which is very often definitely not the case.
It is perfect not to be perfect_
An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walk from the stream to the house, the cracked pot arrived only half full. __For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.__After 2 years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. "I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house." The old woman smiled, "Did you notice that there are flowers on your side of the path, but not on the other pot's side? That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.""For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house."__Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding. You've just got to take each person for what they are and look for the good in them.
To all of my crackpot friends, have a great day and remember to "smell the flowers"!!!!
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