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If you are a female member of the family and your mother or grandmother has or had lipoedema, then the condition could also affect you. Nowadays, many women suffer from lipedema. The chronic fat distribution disorder seems to appear out of nowhere during phases of hormonal changes. It often affects girls or women who otherwise have a slim body. Sudden swellings then develop, particularly on the arms or legs, which can lead to serious health problems and be emotionally distressing.
What causes lipedema has not yet been conclusively clarified scientifically. However, as the fatty tissue disorder mainly affects women, a connection with female hormones is obvious. Significant hormonal changes, such as those that occur during puberty, pregnancy or the menopause, are therefore considered a possible trigger. Researchers also suspect that genetic predisposition plays a decisive role. In today’s blog post, we explore the questions that concern many women: Is lipedema hereditary? Am I automatically affected if I have lipedema in my family? And how high is the risk of lipedema for me? We also take a look at the science of heredity and see whether a predisposition can be influenced.
In general, genetics can have an impact on various diseases. These include diabetes, heart disease, obesity, cancer and mental illness. This is described in the ‘Lipedema Guideline’ published by the German Society for Phlebology and Lymphology (S2K-Lipedema, 5.0, 2024). Genetic predisposition increases the likelihood of developing certain diseases. In technical jargon, this is also known as genetic, familial or hereditary predisposition. It can be caused by a change in the genetic material and can be passed on from parents to their children. For these reasons, many scientists also see a possible connection with lipedema disorders within a family. However, fathers or grandfathers can also inherit the disease without developing it themselves.
The medical basis of lipoedema is limited by the difficulty in making a clear diagnosis. The fat distribution disorder is rarely recognised, especially in the early stages. The symptoms can also overlap with other diseases. For example, lipedema is often confused with obesity, which leads to affected women feeling misunderstood by their personal environment and doctors. However, lipedema is a serious disease of the fatty tissue that cannot be regulated by dieting or exercise. If treated incorrectly or untreated, it inevitably leads to massive health problems that can significantly restrict everyday life. For example, climbing stairs can cause problems due to painful pulling in the legs or lifting the arms above the head can be associated with pain. For these reasons, an early and specialised diagnosis is crucial. The advantage: If there are already diagnosed cases of lipedema in the family, the symptoms occurring in subsequent generations can be better assigned.
Note: You can find out whether you have lipedema, what you can do if you suspect you have it and which doctor can make a definitive diagnosis further down on this page.
There is still a relatively new field of research in biology that deals with hereditary changes in genes. While the actual DNA sequence does not change, the activity of the genes is directly influenced. This refers to epigenetics. It is understood as the link between environmental influences and genes. The term is made up of the terms epigenesis (development of a living organism) and genetics (science of inheritance). Put simply, epigenetics acts as a ‘switch’ in the genome. It helps to determine under which circumstances which gene is switched on or off. You can also find more information on this in the ‘Lipedema Guideline’ published by the German Society for Phlebology and Lymphology (S2K-Lipedema, 5.0, 2024).
You are probably wondering what environmental influences are causing this. It’s not climate change or the seasonal weather. And you will be surprised to learn that you can actively influence many of these triggers. We are talking about factors such as professional or personal stress, diet and habits or hormonal changes caused by the contraceptive pill. Conversely, heredity could be positively influenced by a changed, ‘healthier’ lifestyle. So, in theory, lipedema could also be improved by epigenetics. However, just like lipedema itself, these aspects have not yet been sufficiently investigated or confirmed.
The good news is that not every woman automatically develops lipedema, even if her mother or grandmother had cases in the family. It is therefore possible to be a carrier of a predisposition without the disease itself ever breaking out. But even then, the genetic predisposition can be passed on to the next generation. A daughter or granddaughter may or may not develop lipedema. However, if the female offspring in this family line develop classic symptoms at some point, there is much to suggest that the lipedema predisposition has been inherited.
Many mothers worry about whether their children have inherited a predisposition to lipedema if they themselves have the disease or if there are already cases in the family. Unfortunately, it is not yet possible to test in advance whether the offspring are also affected and carry the predisposition. Only after puberty, which is considered a possible trigger for lipedema, can a suspicion be narrowed down: For example, if the teenager develops stocky legs but otherwise has a slim body. This could be the first sign of lipedema. If other classic symptoms such as pain, tenderness or an increased tendency to bruise occur, parents should seek the advice of an experienced doctor.
Lipedema is a disease that almost exclusively affects women. Boys and men tend not to be affected. Scientists therefore suspect that the development of lipoedema is directly linked to female hormones.
But how does a predisposition to lipedema relate to transsexuality? For example, if a person is born with the characteristics of a boy and later realises that they are actually a girl? Nowadays, there are various options open to this person to adapt their gender identity to their own feelings, for example in social, medical or legal terms. For example, hormone therapies or gender reassignment surgery are available. In many cases, medical gender reassignment involves a combination of different measures.
Through hormone adjustment, it is possible for a transgender person who is now female to develop lipedema even though they were born male. It is suspected that the condition was triggered by the gender reassignment and/or accompanying hormone therapy. However, there is no clinical confirmation of this as yet. The media is currently reporting on a German celebrity who was diagnosed with lipedema as a result of hormone therapy.
Note: As a transgender person, you are also very welcome at the LIPOCURA® competence centres. Let our specialists advise you if you suffer from lipedema or would like a clear diagnosis.
Lipedema is characterised by more or less conspicuous features. The characteristics include disproportionate swelling of the fatty tissue, which can usually occur symmetrically on both sides, mainly on the arms or legs. The characteristic lipedema symptoms also include pain in the affected areas of the body as well as sensitivity to pressure, heavy limbs, an increased tendency to haematoma or an increased sensation of cold. If you notice these signs, you may have lipedema. You have the option of using the self-test developed by our doctors, which will give you further information. For a definitive diagnosis, you should seek medical advice and have yourself examined.
Your GP can certainly also make an initial diagnosis. However, lipedema often requires specialised knowledge, which is often only available from specialists. These include phlebologists (vein specialists), lymphologists (vascular specialists) or specialists in plastic and aesthetic surgery. The specialists carry out a series of tests during the examination. These include palpation, pinch tests, Stemmer’s sign, ultrasound and cross-sectional imaging. This allows diseases with similar symptoms to be differentiated and lipedema to be recognised or ruled out.
One of the main characteristics of a chronic fat distribution disorder is its resistance to dietary measures or exercise. Therefore, a conscious and healthy lifestyle will not help you to prevent lipedema or reduce the risk of inheriting it. Nevertheless, an adapted lifestyle can have a positive effect on the development of lipoedema. This is because it is not uncommon for accompanying conditions such as obesity or diabetes to develop, which in turn can be better managed through exercise and an adapted diet.
It is important to know that lipedema goes through a longer developmental phase with different stages of severity. Early detection and the initiation of individualised treatment therapy therefore play a decisive role when it comes to improving the overall situation. The chances of regaining quality of life are much greater in the early stages.
According to current knowledge, there is no way to completely cure lipedema, as it is a chronic disease. Nevertheless, there are various treatment approaches that can help to reduce the symptoms and even achieve complete freedom from symptoms. In addition to conservative measures such as wearing compression garments or manual lymphatic drainage, these include liposuction in particular. In fact, according to the latest findings, surgical liposuction is the only effective method to permanently combat the symptoms. The pain decreases or disappears completely and the body silhouette changes for the better. Once removed, diseased fatty tissue cannot form there again.
We have been successfully performing liposuction at the LIPOCURA® specialist centres for more than ten years. Our experienced specialists apply a holistic treatment concept that considers the entire body and the patient’s life situation. Based on a comprehensive medical history and specialist advice, we develop an individualised combination of measures that also takes personal wishes into account.
The pathological fat distribution disorder in the female body has not yet been fully researched. Furthermore, although there is still no confirmation that lipedema is hereditary, the prevalence of the disease within the family suggests that it is. While almost only girls or women are affected by lipedema, it can also be inherited from the male line of a family. Transgender people can also be affected by lipedema, with hormone therapy as a possible trigger.
Even if lipedema appears to be genetic, not all (female) members of a family necessarily suffer from it. However, they can pass on the predisposition. The good news is that lipedema can be treated regardless of its current stage and complete freedom from symptoms can often be achieved. Early diagnosis by a specialist and a rapid start to treatment are advantageous. At the LIPOCURA® specialist centres, we use our many years of experience and comprehensive expertise to ensure that you soon feel better again.
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