WORLD LYMPHEDEMA DAY 2024 – ORGANIC LYMPHATIC-VASCULAR DISEASE – MANIFESTO OF THE SPANISH FEDERATION OF LYMPHEDEMA AND LIPEDEMA ASSOCIATIONS
In all the Communities of the Spanish State there are people affected by Lymphedema and Lipedema, and based on our experience we know that they are not diagnosed or are diagnosed late, many do not receive correct information about the disease, there are long waiting lists or problems to access intensive treatment that includes the necessary maintenance, and many patients are forced to pay for their own medical care.
For all this:
1. We defend Public Health, with universal access, as reflected in our Constitution. Our objective is to receive a quality of assistance from the services of those who are direct users.
2. We want to express the need for territorial cohesion in terms of benefits and treatment through Public Health, without discrimination or exclusion for reasons of residence, in relation to diagnostic methods and the use of quality treatments, including those that have recently appeared .
3. We want to propose the implementation of Lymphedema and Lipedema Units in Hospitals, equipped with multidisciplinary teams that can provide quality health care and offer comprehensive care in all medical and psychosocial aspects within public health.
4. We consider it essential to know the prevalence and incidence of Primary and Secondary Lymphedema and Lipedema so that the necessary resources can be allocated to the treatment of this disease. We want to promote epidemiological studies that address the health problems of people affected by lymphedema and lipedema.
5. Research on Lymphedema, Lipedema and Phlebedema must be promoted and supported, as well as all their possible treatments so that they are included in the National Health Plans.
6. We ask that some current practices that are used as treatments that pose a danger or deterioration to health be reviewed, such as the indiscriminate prescription of certain drugs or the misuse of pressure therapy systems, among others.
7. We understand that age should not be a reason for exclusion in the assessment and treatment of the disease since it is a chronic pathology and can manifest itself at any stage of life.
8. We request that early detection programs for Lymphedema, Lipedema and Phlebedema be established, so that health professionals can refer the affected person to the corresponding service: Angiology and Vascular Surgery, Internal Medicine, Dermatology and Medicine Service Physical and Rehabilitation, etc.
9. There must be more information for both the health professionals and for the patient, to be able to access the appropriate treatment as soon as possible, avoiding the worsening of the disease, which leads to an irreversible state and to a greater degree of disability, which can have a negative impact on access to school, work and social integration.
10. We request that the Ministry of Health and Science remove Manual Lymphatic Drainage from its list as a possible pseudotherapy under study, since the General Council of Colleges of Physiotherapists in Spain recognizes this technique as indispensable for the treatment of one of the most important sequelae in mastectomies, such as lymphedema. We also request that the Public Health System finance the maintenance therapies with manual lymphatic drainage suitable for each patient, since it is currently being paid for by the patient.
11. We consider it necessary to include in the portfolio of services of the Health Councils, orthopedic garments suitable for the needs of each patient.
12. We ask that the limitations produced by Lymphedema and Lipedema be taken into account when assessing Work Incapacity, Disability and Dependency.
13. We want to be a valid interlocutor before the Health Institutions in defense of the patient, establishing relations of training, information, coordination and cooperation with the institutions and with related associations both national and international.
We don't want to be INVISIBLE to Society!