We report the article on lipedema published in VanityFair magazine, in which our president was interviewed.
Fat legs, it’s not always the fault of food. What if it’s lipedema?
Lipedema is a rare genetic disease that affects women and causes degeneration of adipose tissue that is difficult to eliminate with diets, exercise and traditional cosmetic surgery. Awareness of this condition can open doors to research and appropriate treatments
June is the month of awareness on lipedema, a genetic disease that affects mainly women and that is often confused with other diseases, for example obesity or lymphedema. In fact, the LIO, Lipedema Italia onlus, wanted to focus attention precisely on the word “awareness,” a good starting point to nurture knowledge.
“Many people present all the symptoms of this disease that affects the subcutaneous adipose tissue, but also the connective tissue, the muscular fascia and the lymphatic and vascular system, but do not 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 Italian Lymphoedema Framework, the Italian extension of the International Lymphoedema Framework, one of the most important and accredited international scientific societies in the field of lymphatic pathologies. “It is important to talk about lipedema in order to increase knowledge about the pathology and thus ensure the right treatments.” Medical care that also involves psychological support, because a pathology like this, does not only affect the legs but above all the self-esteem.
You are affected by lipedema from birth, but symptoms typically arise during puberty, pregnancy, menopause, while taking the birth control pill, during periods of imbalance (post-surgery) or hormone therapy. Photo: Getty Images
WHAT IS LIPEDEMA
Lipedema, a disease also known as symmetrical painful lipohypertrophy of the extremities, is a chronic genetic disorder recognized by the WHO in 2018. It is influenced by female hormonal changes, which is why it usually appears during puberty and almost exclusively affects women, while men are healthy carriers. The mutation of the gene involved in the process of progesterone degradation, causes a progressive and painful increase in adipose tissue in certain body districts, which are mainly the hips, pelvis, lower and upper limbs and abdomen, without affecting the hands and feet.
These are fat cells that do not respond to the normal self-regulating mechanisms of adipose tissue and cause unsightly accumulations of fat in the lower 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 MUTATED GENE
August 29, 2020 is a landmark date that marked a before and after for lipedema. A study of the first mutated gene in a family with primary, non-syndromic lipedema was published in the International Journal of Molecular Sciences. The team led by Dr. Michelini identified the mutated Aldo-Keto Reductase 1C1 gene, an incontrovertible fact of the disease’s existence. “We had been working on this for decades, simply starting from the consideration that the pathology affected only women, cases in men are very rare, manifested mainly at puberty and affecting several generations of the same family. This research is confirmation that the problem is not self-determined by the lifestyle and food choices of patients.”
HOW TO TREAT LIPEDEMA
“Lipedema is caused by anarchic adipose tissue that does not respond to diet or exercise. In fact, there are normal-weight people who nonetheless exhibit symptoms of the condition, and apparently obese people who do not respond to diets. For now, the solutions that we have available to alleviate the problem are special containment stockings that improve pain and swelling, bandages, ketogenic diet under medical supervision, and liposuction, but not all techniques are decisive. The ones that work definitively are Water-assisted liposuction and Power assisted liposuction. In addition, it is still important to exercise and not to let yourself go to obesity because of the frustration and psychological discomfort that can result,” explains Dr. Michelini.
Often confused with obesity, lymphedema or simple cellulite, lipedema is a progressive condition with heredo-familial transmission.
Photo: Getty Images
THE FUTURE OF SCIENCE
Currently, lipedema is not included in the Lea, (Essential Levels of Care), or 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 get lipedema included in the Lea. From a medical-scientific research point of view, 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 mutates, but by studying the nature of the mutation it is not unthinkable to implement natural substances capable of modifying cell replication and restore the normal balance,” says Michelini.
Being aware of lipedema is a way to know it, diagnose it and find the right therapy. It is a pathology that is little known even in the medical world and that needs to have more professional figures prepared. Sara Mantovani, physiotherapist, was the first in Italy to create a multidisciplinary team together with Dr. Daniele Aloisi that combines different professionals 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 internationally shared criteria, we do a clinical and instrumental evaluation and propose an appropriate therapeutic path that is based on nutrition and low-impact physical activity with moderate intensity that also includes water activities,” Sara explains. “To work on the tissues, we do bandages or perform lymphatic drainage that aims to lower pain by working on edema and inflammation.” Together with Dr. Aloisi, she started a master’s program in Lymphedema and Lipedema Rehabilitation that is open to physical therapists and physicians.