Lipoedema: the importance of accurate information

«Lipoedema is in a very complicated spot right now»

Valeria Giordano, president of the association lio

Lipoedema is a relatively new and unknown disease, and even the WHO only recognized it in 2018. Lipoedema is an inflammatory, chronic and debilitating genetic disease that targets the Loose Connective Tissue (LCT). The pathology provokes a progressive, fibrotic and disfiguring increase of the adipose tissue, often accompanied by oedema, systemic inflammation and pain. Even if it is invalidating, it has not been thoroughly studied. Valeria Giordano, president of the association Lio – Lipedema Italia APS/ETS – Associazione Italiana Lipedema (Italian Lipoedema Association), highlights the path patients embark when they ask the association for help. Furthermore, she emphasises the importance of accurate, scientifically-backed information, in order to raise awareness of this pathology recognized by the WHO, but not yet by the SSN (the Italian National Health Service).

Lipoedema emergency

«Our association is a non-profit organisation established in 2018, and it was created to help people affected by lipoedema», Giordano explains. LIO was brought to life by people with lipoedema and by the healthcare professionals who tend to them. «Lio exists to help people know what path they need to follow to prevent overlapping diseases and diagnostic confusion» she continues. In Italy, people with lipoedema often feel lost because there is little to no knowledge of this pathology, owing to the fact that the Italian NHS still has not recognized it.

Lipoedema mainly affects females. «You are born with lipoedema, however the first real symptoms start appearing during puberty; starting from then, the disease never leaves». Adding to the injury, lipoedema tends to worsen during periods where women are the most vulnerable. «We noticed that this pathology gets worse after people hit 30, or during their first pregnancy» Giordan says.

The right to have trustworthy information

The association promotes an educational approach to raise awareness about the disease. «We provide information not only to patients, but also to their relatives and even to healthcare professionals who do not know about lipoedema» the president explains. Correct information is distributed in Italy by professional translations of international scientific papers, and is always validated by experts on the matter, accurately selected by LIO. This is invaluable in order to spread accurate information, and to fight back against fake news. «We try our best to always abide by scientific validation, and we promote different informational events, inviting experts from all around the world. We also hold Instagram directs for patients who want to share their experience» Giordano recounts. 

«International medical counsel is essential, because we are ill», the president says, «and even if patients are sufficiently knowledgeable, they still do not have the means and the education to validate the papers we promote.» Furthermore, the association is also founding partner and member of the Executive Board of the international organisation Lipoedema World Alliance, acting as the point of contact between the patients, the experts and the healthcare workers. «It’s impossible to have a scientific-based approach without the invaluable contribution of patients. However, even in this case, patients’ experience must be gathered according to strict scientific protocols, without simply collecting personal stories».

Future projects of LIO

The organisation is currently studying new tools to survey and assess personal experiences, to promote patient engagement, monitor offered services and efficacy of treatments, to support patient-centric assistance and to put together a list that informs people about the quality of treatments. «Patients are often inundated by therapeutic proposals, often not backed by any scientific proof» Giordano specifies. In some cases, these therapeutic proposals are not only inefficient but even detrimental to the patients’ health. The organisation encourages patients to always request evidence of the efficacy of treatments. 

LIO also pushes for the Italian NHS to finally recognize lipoedema as an official pathology, so that patients suffering from it can have economic support. «Lipoedema currently has no cure, however proper treatments can manage and contain its chronic symptoms and the evolution of the pathology» Giordano says. The biggest obstacle a person with lipoedema has to face is economic: treatment is extremely costly, and even if the person has a serious accreditable disability due to lipoedema, they still have to pay everything by themselves. Many people do not have access to the right treatment for this very reason.

«Recognizing lipoedema would give people access to treatment, which is now only reserved to those who can afford it» Giordano concludes.