REPORT meeting Alliance for health promotion su Lipedema – Ginevra 11 – 12 Novembre 2019

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It was a concentrated and intense two days in Geneva at the headquarters of the World Health Organization (WHO) with the intent to raise awareness of the Organization in order to promote the entry of the disease ‘Lipedema’ among the diseases officially recognized with its own code in the International Classification of Diseases (aka ICD). For the uninitiated, the ICD is a very complex list, continually updated by the WHO, which includes all recognized diseases and all states and conditions of health. Currently the eleventh edition of the ICD is being defined, the ICD11 (while the various National Health Systems still officially use the codes of ICD9 and ICD10, practically overlapping in form and substance between them). The problem of Lipedema is that until now, until the last version, it has been recognized as a ‘clinical condition’ and not as a ‘disease’ with its own well-defined code (as, vice versa, for many years it is for Lymphedema, both primary and secondary).  The purpose of our action, started in 2011 under the presidency of Dr. Michelini Sandro of the European Society of Lymphology with an official Letter to the Director General of the O.M.S. so that the disease was recognized as such, and reinvigorated with a new official letter as President of the International Society of Lymphology sent by the same in June 2019.

Recently, with the help of Dr. Matteo Bertelli (member of the O.M.S. Alliance for Health Promotion), we were able to obtain a hearing (in the form of a short seminar) from the Board of the Alliance, which took place on the afternoon of November 11 in Geneva.

In addition to Dr. Michelini (past president of ISL and current President of ITALF, as well as coordinator of the group) who introduced the work (explaining the characteristics of the disease and the reasons why it was discussed in the context of OMS) and coordinated the interventions, Dr. Bertelli (Head of the Laboratory of Genetics MAGI) who explained the aspects of genetic predisposition to the disease by some individuals and how environmental aspects (epigenetic) influence its progression. It was then the turn of Prof. Szuba (current President of ISL) who described the disability induced by the disease, in its various stages, and the consequent social costs; then Dr. Forner Cordero took the floor and illustrated the diagnostic and therapeutic path towards the disease and Dr. Labschies concluded by highlighting the therapeutic aspects of liposuction in selected clinical cases. The interventions have greatly impressed those present who commented very positively on the action of the group ensuring support for the initiative by the Alliance.

On November 12, in the O.M.S. headquarters, Following new talks on the subject introduced by the very active secretary of the Alliance Szozanski, some members of O.M.S. have put Dr. Michelini and Dr. Bertelli in touch with the O.M.S. responsible for the Department of Nutrition. He has reserved the right to organize (probably by mid-February 2019) a new meeting (a ‘Lunch-time-seminar’, as he defined it) to explain in detail (supported by the current literature) the reasons that lead to the entry of the disease among the diseases recognized with its own specific code in the ICD11, in the presence of the same responsible and the head of the Department dedicated to the formulation of the ICD (complex reality in which many centers participate at the international level).

In the wake of these innovations we are going to fight the final battles so that, similarly to what happened with Lymphedema, the pathology will be finally recognized and this will allow us to intervene actively in favor of patients with the appropriate awareness of public and private health systems responsible for meeting their needs.

Sandro Michelini