June is Awareness Month on lipedema, a genetic disease that mainly affects women and is often confused with other diseases, for example with obesity or lymphedema. The LIO, Lipedema Italia onlus, in fact, he wanted to focus precisely on the word “awareness”, a good starting point for nourishing knowledge.
“Many people have all the symptoms of this disease that affects the subcutaneous fatty tissue, but also the connective tissue, the muscle fascia and the lymphatic and vascular systems, but they don’t know they have lipedema.
A pathology that is still little known even by specialists and this leads to a late diagnosis and therapies that can worsen the problem “, says Dr. Sandro Michelini, angiologist and president of the International Lymphoedema Framework, one of the most important and accredited international scientific societies in the lymphatic pathologies sector. “It is important to talk about lipedema to increase knowledge about the disease and thus ensure the right treatments.” Medical treatments that also involve psychological support, because a pathology like this does not only affect the legs but above all self-esteem.
WHAT IS LIPEDEMA
The lipedema, also known as painful symmetrical lipohypertrophy of the extremities, is one chronic genetic pathology recognized by the WHO in 2018. It is influenced by female hormonal changes and that is why it usually appears during puberty and almost exclusively affects women, while the man is a healthy carrier. The mutation of the gene involved in the progesterone degradation process causes a progressive e painful increase in fatty tissue affecting some parts of the body, which are mainly the hips, the pelvis, the lower and upper limbs and the abdomen, without affecting the hands and feet. They are fat cells that do not respond to the normal self-regulation mechanisms of adipose tissue and cause unsightly accumulations of fat in the lower part of the body, as well as systemic inflammation. In lipedema, fibrotic fat can be extremely painful, physically and psychologically, and is difficult to lose through diet and exercise.
THE DISCOVERY OF THE MUTED GENE
August 29, 2020 is a key date, which marked a before and after for lipoedema. On’International Journal of Molecular Sciences the study on the first mutated gene in a family with primary non-syndromic lipoedema was published. The team led by Dr. Michelini has identified the mutated gene Aldo-Keto Reductase 1C1, indisputable fact of the existence of the pathology. “We had been working on it for decades, simply starting from the consideration that the disease affected only women, cases in men are very rare, it manifested itself mainly at puberty and affected several generations of the same family. This research confirms that the problem is not self-determined by the lifestyle and food choices of the patients ».
HOW LIPEDEMA IS TREATED
«Lipedema is caused by anarchic adipose tissue, which does not respond to diet or exercise. In fact, there are people of normal weight who, however, have the symptoms of the disease, and apparently obese people who do not respond to diets. For now, the solutions we have available to alleviate the problem are special compression stockings that improve pain and swelling, bandages, medically supervised ketogenic diet, and liposuction, but not all techniques are decisive. The ones that definitely work are Water-assisted liposuction and Power assisted liposuction. Furthermore, it is still important to exercise and not indulge in obesity due to the frustration and psychological discomfort that can result from it “, explains Dr. Michelini.
THE FUTURE OF SCIENCE
Currently, lipedema is not inserted into the Lea, (Essential levels of care), i.e. the benefits and services of the National Health Service (NHS), while some countries including Germany provide braces, conservative therapies and surgical sequences to patients. “Our main battle is to have lipoedema inserted into the Lea. From the point of view of medical-scientific research, the next goal is to be able to identify markers that simplify the diagnosis of the pathology. We still do not know why this gene changes, but by studying the nature of the mutation it is not unthinkable to implement natural substances capable of modifying cell replication and restoring normal balance », says Michelini.
Being aware of lipedema is a way to know it, diagnose it and find the right therapy. It is a little known pathology even in the medical world and which needs to have more trained professionals. Sara Mantovani, physiotherapist, was the first in Italy to create a multidisciplinary team together with Dr. Daniele Aloisi that unites different professional figures for a path of care and support at 360 degrees. The project, which involves experts in angiology, nutrition, physiotherapy and sport, is the Lipedema Italy project present in Bologna, Brescia and Rome. “Following the internationally shared criteria, we make a clinical and instrumental evaluation and propose an adequate therapeutic path that is based on nutrition and low-impact physical activity with moderate intensity that also includes water activities”, explains Sara. “To work on the tissues, we make bandages or perform lymphatic drainage which aims to reduce pain by working on edema and inflammation”. Together with Dr. Aloisi he started a master in rehabilitation of lymphedema and lipedema open to physiotherapists and doctors.
In gallery 9 things to know about lipedema.
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