REPORT meeting Alliance for Health Promotion (A4HP) on Lipedema and 9th Global Forum on Health Promotion

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  Geneva  11th – 12th November 2019

Today we speak about Lipedema, a progressive, chronic, incurable ‘clinical condition’ that manifests itself almost exclusively in women characterized by an accumulation of fat in the circumscribed subcutaneous tissue leading to a disproportionate increase in volume, mainly in the areas of the hips, buttocks, legs up to the ankles or arms. The areas affected may also be sensitive, painful under pressure, but also subject to spontaneous pain.

Since Lipedema is little known, not diagnosed as a disease and often confused with simple obesity or other disorders that may coexist with it, we report the findings of the meeting Alliance for Health Promotion on Lipedema which was held on 11thof 12thNovember in Geneva at the headquarters of the World Health Organization (WHO).

The meeting was attended by Prof. Sandro Michelini (past president of the European Society of Lymphology ESL and current President Italian Lymphoedema Framework), Dr. Matteo Bertelli (President of the Laboratory of Genetics MAGI EUREGIO and member of the Association consortium O.M.S. Alliance for Health Promotion’), Prof. Andrezj Szuba (current President of the International Society of Lymphology ISL), Dr. Isabel Forner-Cordero (assistant professor in the Lymphedema Unit at the University Hospital La Fe, Valencia) and Dr. Frank Labschies (President of Med-Plast and member of the German Association of Plastic, Reconstructive and Aesthetic Surgeons).

It was a concentrated and intense “two days” with the aim of raising awareness of the O.M.S. to promote the entry of ‘Lipedema’ among the diseases officially recognized by its own code in the International Classification of Diseases (alias ICD). For non-experts the ICD is a list, very complex and continuously updated by the O.M.S., that includes all recognized diseases and all states and health conditions. Currently, the various National Health Systems officially use the ICD9 and ICD10 codes, which are practically superimposable in form and substance, but the eleventh edition of the ICD is in the process of being defined.

The problem with Lipedema is that up to now, until the latest 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 has been for Lymphedema, both primary and secondary). To support this problem, in 2011 the President Prof. Sandro Michelini of the European Society of Lymphology sent an official letter to the Director General of O.M.S. and another one in June 2019 to the President of the International Society of Lymphology.

In this regard, on the afternoon of November 11th, a brief hearing was also held by Dr. Matteo Bertelli. Participants: Prof. Sandro Michelini who coordinated the interventions and introduced the works explaining the characteristics of the disease and the reasons why they were discussed in the context of the O.M.S..

Dr. Matteo Bertelli then took the floor to clarify the aspects of genetic predisposition to the disease by some individuals and how environmental (epigenetic) aspects influence its progression. It was then the turn of Prof. Andrezj Szuba who described the disability induced by the disease, in its various stages, and the social costs. Afterwards Dr. Isabel Forner Cordero illustrated the diagnostic-therapeutic path towards the disease and concluded Dr. Frank Labschies highlighting the therapeutic aspects of Liposuction in selected clinical cases. Those present were very involved by the speeches and commented very positively on the action of the group ensuring support for the initiative by the Alliance.

On the day of the meeting on November 12th, the very active secretary of the A4HP Dr. Gabriella Szozanski introduced new talks on the subject during which some members of the O.M.S. have put in communication Prof. Michelini and Dr. Bertelli with the Head of the O.M.S. Department of Nutrition, Dr. Francesco Branca whom received and listened very carefully to the issues raised and reserved the right to organize, probably by mid-February 2020, a new meeting that he called ‘Lunch-time-seminaire’ to set out in detail the reasons that lead Lipedema to the entry of this pathology among the diseases recognized with their own specific code in the ICD11. The meeting will be held in the presence of the Director (Dr. Francesco Branca) and of the head of the Department dedicated to the formulation of the ICD, Dr. Robert Jakob.

In the wake of these changes, the members of the Alliance for health promotion on Lipedema will be preparing to fight the final battles so that the Lipedema will be definitively recognized as a disease, similarlyto what happened with Lymphedema. This will allow active intervention in favor of patients with the appropriate awareness of the public and private health systems responsible for meeting their needs.