Lipoedema is a condition still shrouded in misconception, with misdiagnosis from healthcare professionals still common, and many women suffering for years before a diagnosis is made.
As part of Lipoedema Awareness Month, we decided to dispel many of these myths, plus start to educate members of the public about lipoedema with 30 facts about the condition which you might not know.
Please comment with any other facts you have, we’ve stopped at 30 so we can share one post every day of the month.
1.) Lipoedema (US spelling ‘lipedema’) typically presents as bilateral, symmetrical enlargement of the lower limbs as a result of excess fat deposition. The legs, thighs, buttocks and sometimes the arms are affected.
2.) It has been estimated that approximately 10% of women in the UK suffer from lipoedema.
3.) The severity of lipoedema is expressed in terms of ‘Stages’ and 3 stages have been recognised; Stage 1, II & III. Stage III is the most advanced.
4.) “The European Lymphology Society (ELS) has identified 5 types of lipoedema, based the distribution of abnormal fat;
Type I – affects the buttocks
Type II – affects the buttocks, hips, and thighs
Type III – affects the buttocks, hips, thighs, calves
Type IV – same as III and affects the arms
Type V – affects the calves
5.) Three stages of lipoedema have been identified:
Stage I: has a normal skin surface. The subcutaneous fatty tissue has a soft consistency but multiple small nodules can be palpated (“orange-peel skin”). This stage can last for several years.
Stage II: the skin surface becomes uneven and harder due to the increasing nodular structure (big nodules) of the subcutaneous fatty tissue (“mattress skin”).
Stage III: lobular deformation due to increased fatty tissue; palpable nodules varying in size from a walnut up to a fist; large, deforming folds of fat. Skin bulges are most common around the medial knee.
6.) Advanced cases of lipoedema can take many years to develop.
7.) The actual cause of lipoedema is not known. It is thought that genes and/or hormones may be involved and this because lipoedema only affects women and often appears or worsens at times of hormonal imbalance such as puberty, pregnancy or menopause.
8.) Some women report their lipoedema was triggered or worsened at times of stress, such as family bereavement or divorce.
9.) While diet and exercise will not reduce lipoedema fat, it can help lose visceral weight and improve overall health.
10.) Delaying lipoedema treatment can lead to conditions such as knee arthritis, fibrosis of subcutaneous fat and lymphoedema.
11.) Individuals with lipoedema are often misdiagnosed as simply being overweight or mistaken for having lymphoedema.
12.) One of the unusual features of lipoedema is the nodular consistency of the fat. Patients can often feel hard lumps of fat under their skin (See photo below)
13.) Lipoedema almost exclusively affects women but has also been observed in men.
14.) Family history can be helpful because lipoedema does have a hereditary component. It is estimated that 15% of people with lipoedema have a family member with it.
15.) Enlargement of the upper and lower limbs in patients with lipoedema is typically symmetrical. A hallmark feature of lipoedema is the development of pre-tibial fat pads (a large deposit of fat just below knees). However, enlargement of the lower limbs due to lipoedema can be asymmetric (see photo below).
16.) Lipoedema has been shown to affect the upper limbs in about 30% of patients and in these cases, it usually affects the arms (as opposed to forearms).
17.) Areas with lipoedema fat can be tender to touch or pressure, and prone to bruising.
18.) Lipoedema patients often report the skin on their lower limbs feels less elastic.
19.) Lipoedema usually presents as excessive fat accumulation in the lower body, starting at the top of the iliac crest (the bones at the waist), while the upper body remains thin. If the upper body appears proportionately obese, it is not likely to be lipoedema.
20.) Lipoedema is a progressive condition with symptoms worsening over time. The rate at which the disease worsens varies from patient to patient.
21.) Patients with lipoedema often report spontaneous bruising on their lower limbs, which reflects capillary fragility (see photo below)
22.) Circulation of lymph is generally normal in patients with lipedema. However, as the disease progresses lymphatic transport may become impaired leading to accumulation of lymphatic fluid in the fat. The high protein and fat content of lymph fluid subsequently induces fibrosis and resultant progression to lipo-lymphoedema.
23.) Fat deposits may hurt spontaneously in some patients even without pressure or without being touched at all. This pain is typically not responsive to over-the-counter painkillers.
24.) In lipoedema,’Stemmer’s sign’ is negative. This means that you are able to pinch and lift the skin on the back of the second toe. If Stemmer’s sign is positive, one cannot pinch and lift the skin on the back of the second toe and this is indicative of lymphoedema.
25.) Stemmer’s sign is positive in cases of lymphoedema and negative in cases of lipoedema. However, a very small number of lipoedema patients also have lymphoedema, a condition known as lipo-lymphoedema, and have positive Stemmer’s sign.
26.) Every lipoedema patient is unique and has their own challenges. Patients present in a variety of ways so treatment must be thoroughly planned, taking into account the areas to be treated, the timing between sessions of liposuction and co-existing medical issues.
27.) Liposuction is the only treatment that can reduce the size of the limbs, reduce the weight of the limbs, reduce pressure-induced pain and improve knee range-of-motion.
28.) Since lipoedema is not very well known, it is often incorrectly diagnosed as simple obesity, or as primary lymphedema (a congenital form of lymphedema that often affects both sides of the body).
29.) The diagnosis of lipoedema is made on the history and examination findings. There are no specific diagnostic tests, although some investigations (thyroid function tests, lymphoscintogram, MRI) can help aid diagnosis.
30.) Non-surgical therapies do not reduce the volume of limbs but can provide relief of symptoms, such as pain and oedema. Non-surgical therapies include, compression hosiery, manual lymphatic drainage (MLD), intermittent pneumatic compression, exercise and adopting an anti-inflammatory diet.