The IIS Aragón investigates the prevalence of lymphedema in the community to improve knowledge and the quality of life of patients

Next March 6, World Day of this disease will be celebrated, which causes an increase in the size of the extremities, which affects the mobility and self-esteem of those who suffer from it.

Dr. Lorena Rodríguez, who leads the project, highlights the importance of unifying criteria for the early detection of this pathology, since there is no curative treatment.

Describe the prevalence of lymphedema in Aragon, assess the knowledge that health professionals have of this disease and contribute to improving the quality of life of patients who suffer from it. These are the objectives of the clinical research being carried out by Dr. Lorena Rodríguez at the Aragón Health Research Institute (IIS Aragón). Through her project 'Lymphedema in Aragon: prevalence, quality of life and knowledge of health professionals about the pathology' she also seeks to give visibility to these patients on International Lymphedema Day, which is celebrated on March 6.

This pathology is caused by the accumulation of lymph, a liquid that is transported by the lymphatic system, a drainage system of the human body. When this does not work correctly, water and waste substances accumulate, producing an increase in size in the affected limb, which causes limitations in the patient's mobility and daily activity, in addition to skin changes, low self-esteem and possibility of suffering other infections.

Rodríguez, a researcher at the Aragonese Group for Research in Primary Care (GAIAP) at IIS Aragón and a doctor specializing in Family and Community Medicine in Emergencies at the Miguel Servet University Hospital, has been immersed in the project for a year. “It is a limiting and very disabling disease when it reaches advanced stages, which has a great impact on the quality of life of patients due to its multiple physical, aesthetic and psychosocial complications. But in the last 20 years there have been no advances in terms of treatments, there is no consensus on the matter and it depends on the specialist's decision,” laments the doctor. There is also no curative drug nor one that significantly reduces the size of the area in high stages. “What is usually applied is compression of the affected limb with multilayer bandages and conservative treatments with decongestive physical therapies, although the best measure is to detect it in its early stages,” says Rodríguez. Thus, the patient evolves depending on the knowledge and technique that the treating specialist has to perform the bandages.

According to their studies, 1,3% of the Aragonese population suffered from lymphedema in 2017. “We do not have more updated or homogeneous data, partly because there is no specific code to name this pathology and be able to code it computerized. There are up to 20 different codes and none of them are clear, so it would be very important to unify criteria to homogenize the information both in the hospital setting and in Primary Care,” Rodríguez demands. “The results of our surveys reveal that 90% of family and community medicine specialists agree that more training is needed in this pathology for its early detection and the need for an approach from different areas,” he points out. Therefore, the objective of their project is the creation of a multidisciplinary team that can fully care for these patients in all areas, as well as the development of a clinical management guide to be able to detect it in Primary Care and so that health workers know what tests to order, who to refer the patient to, what treatment to apply and how to follow up.

The best known lymphedema is secondary to breast cancer surgery. In fact, there is a specific consultation to try to detect it early in patients. However, the most frequent in the world is caused by infections, mainly due to filariasis. “It occurs in endemic areas of Southeast Asia, India and Africa, where it affects more than 200 million people,” says Rodríguez, who adds that it can also occur secondary to trauma or after receiving chemotherapy. “Primary, it can be congenital or associated with other diseases with vascular disorders,” he explains.

Rodríguez's project is carried out in close collaboration with the Association of People with Lymphedema of Aragon (ADPLA), which has been working since 2003 to give visibility to the disease and support its more than 200 partners, including patients and family members, in the face of the need to unite to give voice to their rights. ADPLA offers individualized care by specialized physiotherapists, workshops and activities on specific care or information sessions, such as the one it will hold on March 6 in the Plaza de España in Zaragoza on the occasion of International Lymphedema Day. Their demands involve asking for greater public coverage for rehabilitation sessions and for the compression garments essential in their daily lives, as well as tools to increase early diagnoses.