Lipedema Awareness Month: what is lipedema?

I had never heard of lipedema until my mom was diagnosed with it around 17 years ago. This is the case for many people: they haven’t heard of it unless they know someone who has been diagnosed with it or are diagnosed with it themselves. And yet, it is incredibly common! Since June is Lipedema Awareness Month, in this post I want to explain what lipedema is in order to raise a bit of awareness for this disorder.

So what is lipedema exactly? Lipedema (also known as lipoedema) is a disorder of the adipose tissue which causes deposits of fat under the skin. These areas may bruise easily and can be really painful. The texture beneath the skin can also feel bumpy. It affects mostly the legs, but in later stages it can also affect the arms and the torso. Lipedema almost exclusively affects women – but it is estimated that up to 11% of women may have it, so that is quite a lot. This might be an overestimation though, and the exact incidence is unknown.

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Lipedema is divided in both types and stages. Types describe in which area of the body the fat is distributed, and stages describe the level of fat accumulation and skin involvement. There are a total of 5 types and 4 stages, where stage 4 is the most visible. However, in which stage a patient is in does not necessarily say anything about the amount of pain they are in or their quality of life. Someone might be in stage 1 and only have lipedema in their upper legs, but still be in a lot of pain daily.

Lipedema often occurs together with fibromyalgia, hypermobility syndromes and lymphedema, which is characterized by swellings of fluid caused by the lymphatic system not working properly. It is also linked to hormones: lipedema often first occurs or worsens around puberty, pregnancies and menopause. It is thought to have a genetic component as well, because it often runs in families. However, the exact cause of lipedema is unknown.

Although lipedema has been a known disorder since the 1940s, many doctors don’t even know that it exists. People with lipedema often face the same stigma that all fat people do, and doctors might dismiss their issues as eating too much or not exercising enough. While the onset is usually in puberty, the average age of diagnosis is 44 years old! Often patients don’t only struggle with pain and limited mobility, but also have a low self-esteem and other psychological issues because of dismissal by medical professionals and stigma in society.

Lastly, there is little treatment for lipedema. Although exercise and diet can sometimes help against pain, they don’t help to lower the lipedema fat. Restrictive diets might in fact cause your body to store even more fat instead – both in people with and without lipedema. Because the lymphatic system may be involved and it is often comorbid with lymphedema, some treatments that are used for lymphedema may help, such as manual lymphatic drainage and compression garments. These can both stimulate the lymphatic system and help with pain. Some people may also opt for liposuction, as having less fat can also reduce pain and increase mobility. However, this is not always effective in the long term.

Lipedema runs in my family, so there is a huge chance I have it too. My upper legs have always been quite heavy, and they tend to be quite sensitive and be a bit painful, especially when I’m tired. Luckily I have been aware of this since puberty, so I have always known why my upper legs and hips are two sizes bigger than the rest of my body. This has helped me a lot with accepting my body the way it is, and I knew to never follow any restrictive diets.

Early diagnosis of the disease can help people to manage it better, prevent it from getting worse, and it can improve people’s mental health and help them accept their bodies the way they are. It can also help people to get access to the healthcare that they need, as fatphobia often prevents fat people from getting care for unrelated health issues. While no one should be treated this way regardless of their weight, a diagnosis can be useful to not have doctors dismiss your issues and get treatment for both lipedema-related and other health problems. This is why it’s so important to create awareness for lipedema and make sure both doctors and the general public know it exists. Everyone deserves a proper diagnosis and treatment for any illness.

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