WORLD MONTH OF LIPEDEMA (JUNE)

LIPEDEMA is a disease recognized by the WHO o May 8, 2018 and included in ICD-11 catalog (International Classification of Diseases) under code EF02.2 "Non-inflammatory disorders of subcutaneous fat". This completely unknown pathology is not uncommon, but it is underdiagnosed and undertreated by health. Surprisingly, it affects 16% of the world’s female population but also men: a total of about 616,000,000 people.

Its origin is unknown, it is chronic and there is no cure. The main symptoms are thickening of arms and legs and it has a hormonal component. It is confused with obesity, but does not respond to diet or exercise. It produces constant and disabling pain, narrowing of the capillaries and lymphatic damage. In advanced cases, it severely affects our mobility by preventing us from walking and fending for ourselves.

Due to lack of research, we only have expensive conservative treatments and surgery in private clinics.

Being a pathology invisible for our health system it is very much about having a medical diagnosis. Without a diagnosis and therefore conservative treatment, we get worse. Even with a diagnosis, we have serious difficulties in getting treatment in public health, so we end up paying out of pocket to try to reduce the pain and worsening of the disease.

We are not invisible. You see us on the street, on the beach. Legs and / or arms disproportionate to the rest of our body, narrow waist… People do not know that it is lipedema, call it fat, obesity, laziness, lack of willpower or, directly, point, laugh and make fun: “elephant legs ”.

From the Galician Association of people with lymphedema, lipedema, chronic venous insufficiency and other peripheral vascular pathologies (AGL), we join this Manifesto published from different entities and we want to express and claim:

1.- We have the right to receive quality care in public health because we suffer from an incurable chronic disease recognized by the WHO that causes us serious health problems.

2.- We express the need for territorial cohesion in terms of prescriptions and treatment through Public Health, without discrimination or exclusion for reasons of residence, with regard to diagnostic methods and the use of quality treatments, including those of recent appearance .

3.- It is urgent and necessary to implement Lymphatic Pathology and Lipedema Units in hospitals, equipped with multidisciplinary teams that can provide quality health care and provide comprehensive care in all medical and psychosocial aspects within public health.

Prevention and treatment would save a large amount of economic funds to the public system. The cost of not treating this pathology that results in possible cases of disability, is higher than the cost of diagnosis and containment.

4.- We consider it important to know the prevalence and incidence of Lipedema to know what resources should be allocated to the treatment of this disease. Epidemiological studies addressing health problems of people with lymphatic pathologies and lipedema should be promoted.

5.- Research into lymphatic pathologies and lipedema should be promoted and supported within the National Health Plans.

6.- We call for a review of current practices that pose a danger and / or worsen the health of sick people, such as the indiscriminate prescription of certain drugs or the incorrect use of pressure therapy systems, given that current scientific evidence is inconclusive. .

7.-We understand that the type of Lipedema and the affected area, should not be a reason for exclusion for the treatment of the same, because it is a chronic pathology.

8.- We request that programs of early diagnosis for lipedema as well as post-surgery prevention programs be established.

9.- A greater formation of lymphatic pathologies and lipedema must be included in the faculties of Health Sciences.

10.- We request that the Public Health System finance the most appropriate maintenance therapy for each patient, given that it is currently being paid for privately.

11.- We consider it necessary to include in the Orthopedic Catalog, the orthopedic garments appropriate to the needs of each patient.

12.- We ask that the limitations produced by Lipedema be taken into account when carrying out assessments of work incapacity and / or degree of disability, in accordance with international criteria.

13.- We want to be a valid interlocutory body before the Health institutions in defense of the Patient