Lymphedema interview to Dr. Sandro Michelini

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What is lymph?

Tomhas Mann wrote in his book ‘The Magic Mountain’: ‘The sap is the best product, the most secret and delicate of all the work of the body. We always talk of blood and its mysteries, it is called special mood, but is the sap the true mood of the humors, the essence, the gist of the blood, a large and delicious force ‘. In fact, the sap is an organic liquid present in all the tissues of our body, with components similar to those of the blood but with different concentrations, the product of the continuous workings of cells that excrete certain end products of their metabolism to the outside so that they are drained and then ‘purified’.

As the sap flows and what serves the lymphatic system?

The sap flows in every area of ​​the body through a system of channels of variable size, connected to each other. These, at several levels, meet in their course structures called vesicles formed lymph nodes or lymph nodes that contain within them numerous cells responsible for immunity. In their passage through these intermediate stations that could be compared to the toll of the motorway, the components of sap are analyzed by these cells and whether there are potentially harmful for our body (toxins, bacteria, viruses) are fought by these cells immune and, in most cases (fortunately for us) destroyed or deprived of their pathogenicity. The lymphatic system, therefore, in addition to transport substances that then earn the blood circulation system with natural markets finals of major lymph ducts, represented by veins at the base of the neck, has a very important function of the immune defense of the body.

What is Lymphedema occurs and how?

The Lymphedema is one of the diseases that affect the lymphatic system. It consists of an abnormal accumulation of lymph fluid in a particular region of the body, linked to the difficulty of transporting local lymphatic system. In few words the lymph in the tissues of that area continues to be produced in normal amounts but is the system of channels and stations interposed between these lymph node that does not have a sufficient transport capacity. Lymphedema occurs because a? The reasons are essentially two: either there is a constitutional predisposition (often hereditary) based on a changed or reduced development of lymphatics or lymph glands (often at the root of the limb), and in this case we will speak of primary lymphedema; or the streets and lymph node stations may be damaged or removed by surgery or radiotherapy or infections during the course of life, and in this case we will talk about secondary lymphedema. In both cases the transport difficulties may occur at different times but always manifests itself as an increase in volume (often combined with increased consistency) of the body area no more ‘drained’ sufficiently.

How important the lymphedemas in the population?

Today it is estimated that there are at least 300 million cases worldwide (including primary and secondary) and are up. Especially in increase appear to be secondary forms (often related to removal of lymph nodes to meet a criterion of surgical radicality against a tumor that could, or has already done so, invade the lymphatic system local). With current surgical therapies and radiotherapy the tumor wins more and more and better but residual disease linked to the radical therapy that must be sustained by the patient, often getting younger. It remains in many cases the Lymphedema residue which can appear at a distance of time from the treatment extremely variable (from a few days to many years). As an example, today in Italy are performed approximately 50,000 operations per year for breast cancer with a survival considerably. Of these, about 20-25% will develop lymphedema of the upper side where the surgery was performed, due to the necessary removal, in many cases, the axillary lymph nodes. Only as a result of the treatment of this disease, then, in Italy it grows about 10 to 11,000 new cases of lymphedema secondary year.

What does the NHS for patients with lymphedema?

In this moment there is no specific care network organized in order throughout the country. The NHS actually knows many regional realities, some of which are more ready to incorporate the needs that emerge in this sense in the area (very few), other (and most) do not consider the problem at all with serious inconvenience personal and social skills for the patient who is affected. In reality there is a culture of care for diseases of this type which also appear to be disabling, and in some cases, ‘strongly’ disabling. Patients often end up in the emergency room for inflammatory or infectious complications borne limb or body region affected (with a high fever and impaired general state) and maybe their affection is not even diagnosed or confused with thrombophlebitis (happens frequently) and mistakenly treated for this. Suffice it to say that the Lymphedema is considered the disease state official nomenclature as a ‘skin disease’ rather than a vascular disease. This is because, traditionally, in the past, when appeared the complication for which the skin of the affected area suddenly became red, hot and painful, the patient was sent to a dermatologist, regardless of the state that existed prior to acute complication and what inevitably followed the same. In the same university training courses for doctors, physical therapists and nurses, only now it begins (and only in some universities) to talk about lymphedema. However, many centers are flourishing spontaneously (affiliated or not) with good quality care, quite common in the territory to cover large areas. The problem remains that many patients are forced to pay from their own pockets treatments and elastic garments that follow the acute phase treatment, as not covered by the essential levels of care of many regional health plans. And ‘the final study at the Ministry of Health a final document to address the regions that regulate early assistance to these pathologies. The same Nomenclatore include clothing elastic final that patients will have to wear. The ITALF has put considerable effort into the final draft of this important document that provides for the possibility of appropriate assistance and complete the area for every citizen.

What treatment options you use today?

Besides some possibility of surgical treatments of the lymphatic system, performed with microsurgical techniques (microsurgery, supermicrochirurgia, lymph node transplants) only at very few highly specialized centers, not always solvers, and drug treatments that have only a moderate effect in the clinical stages of the disease , it is the physical rehabilitation treatment which plays a major role in this area. Through a set of techniques of manual and mechanical drainage and the application of bandages which follows a series of specific exercises, it is possible, in most cases, achieve good clinical results that may be maintained and consolidated from the observance of the garment elastic and defined by a proper hygiene of life. For the specificity of the problem it is obvious that the TEAM that takes charge of the patient must be specially prepared (with all the diagnostic investigations and differential diagnosis that the case requires), and investment experience to the individual treatment approach.

Where you can direct a patient with lymphedema and with what prospects?

There are more reliable distribution centers in macro-regions. To know them is sufficient to consult the Internet and, in particular, the site of an association of patients, freely constituted, called ‘SOS Lymphedema’ recognizing in the founding President Franco Forestiere (naturally patient with lymphedema with all its history, common to the other, of continuous wanderings in search of a stable solution to his problem). Consult the site you may find the experience of many patients who, in one way or another, have found their balance for the monitoring of a chronic disease that, if left to itself, has the natural tendency to outbreaks clinics, the complications and clinical all’evolutività.

You can better describe the fate of the patient with lymphedema in the Italy of 2015, and as possibly correct this to achieve a ‘fair health’?

The latest report on ‘the policies of chronicity’ just by Active citizenship (with the collaboration of the Tribunal for Patients’ Rights and the National Coordination of Associations of chronically ill) remember, in the beginning, that one of the assumptions of 14 European Charter Patients ‘Rights states:’ Everyone has the right to access to health services that his state of health requires. The health services must guarantee equal access to everyone, without discrimination on the basis of financial resources, place of residence, kind of illness or time of access to the service ‘. Today, in Italy, it is not. There are local situations (such as Sardinia, some AA: SS.LL. Tuscany, Trentino, Lombardy, Sicily and Puglia) where at least clothing elastic, fundamental to the control of the disease, are reimbursed or provided directly. In most of the other regions it does not. But the paradox of paradoxes is that if an Italian citizen is authorized to perform the treatment abroad (and this still happens to too easily by the regional principals in charge of these authorizations, although there are many national centers qualified to perform those services) At the end of the cycle we are also reimbursed clothing elastic prescribed by the doctor of the hospital abroad. Central legislation is necessary (and in this respect the work done by the special Ministerial Commission I personally coordinated and that quickly led to the drafting of the final Guidelines that are on the table of the Minister, have a great practical value), legislation that is passed in the level of individual regions and that these transpose the need to organize the regional reference centers that take in or solve problems on the territory of the many patients who are still waiting for concrete answers to their care needs.

The ITALF is giving new impetus to these new dynamics and soon we hope to provide data on memoranda of understanding reached finals at the institutional level.