SOS LINFEDEMA ONLUS è stata presente al 24mo Congresso della Società Mondiale di Linfologia.
La nostra associazione di pazienti e solidali in patologia, prima in Italia ad aver raccolto le esigenze di migliaia di persone sofferenti e l’unica considerata dal Ministero come associazione di pazienti e volontari per la diffusione delle conoscenze sul Linfedema, è nata in Italia nel 2007 tra malati di linfedema, loro familiari e volontari, per diffondere la conoscenza di questa patologia, per promuovere la ricerca sulla patologia e per tentare di sensibilizzare il Ministero della Salute affinché la riconosca come cronica, invalidante e ingravescente (definizione dell’Organizzazione Mondiale della Sanità) e non come erroneamente viene oggi definita, una semplice affezione dermatologica
Per l’Associazione ha preso la parola , in qualità di co-referente per il Lazio della SOS Linfedema, la dr.ssa Nunzia Tramparulo.
Ecco il saluto presentato dalla nostra dr.ssa Nunzia Tramparulo, in inglese (per rispetto alla internazionalità dell’evento)
To the Presidency and participants the XXIV Congress of the ISL – ROME
Subject: The role of patients’ associations in the construction of a network for the diagnosis and treatment of lymphedema: experiences and perspectives.
Our association was born in Italy in 2007, including lymphedema patients, their families and volunteers, to spread awareness of this disease and groped to sensitize the Ministry of Health in order to recognize it as having chronic debilitating and worsening (definition of the WHO – World Health Organization) and not as erroneously defined in the ministerial today is a simple dermatological disease). The association is present throughout the national territory by its regional contacts that treat directly the relationship with the local health authorities, the regional departments work directly with medical specialists and researchers in the dissemination of useful information to those who are suffering from this disease. An anomaly that we would like to report about the recognition (more legitimate) of the Ministry of Health (via the mod. E112) to patients with Italian lymphedema to be able to enjoy free medical care abroad (Germany and Austria) where they are active, in the context their respective health services, specialized clinics dedicated to the rehabilitation of these diseases. Each lymphedema patient in order to benefit the necessary 2 or 3 annual cycles of rehabilitative care, to be carried in Italian reference centers, must bear its own costs in, compounded, among other things, of the charges for the purchase of the necessary kit bandage, the expensive tailored elastic supports (abroad are provided with a modest co-payment) as well as drugs use, for the total present in the market as supplements. Patients with lymphedema to heal, must individually incur costs that vary on average between 6000 and 13,000 euro per year, excluding surgery, costs that will be incurred for life. In most cases, the costs are not sustainable by any household, so that we record, in the forums of our sites, with increasing frequencies close together, the bitter and painful outburst of lymphedema patients unable to heal or ‘who give up caring ‘.
More recently, found that by the delay in issuance of the ministerial guidelines and reorganization of the LEA (Essential Levels of Care), in close collaboration with the network Lymph, coordinated by prof. Michelini and the Magi of Dr. Bertelli (which deals with the genetic research on lymphedema), we have operated a pressure on certain health realities of some Italian regions, where there has been a certain sensitivity and attention, to promote and implement rehabilitation activities for lymphedema patients, supported by the grant of elastic supports, from the Regions. So, even if slowly and patchily, something begins, to move from “below”, in favor of lymphedema, in regions such as Piedmont, Lombardy, Tuscany, Trentino Alto Adige, Apulia, Basilicata and Sicily . The association, through its sites and its active pages on major social-network, acts as a sounding board between the scientific community, which deals with the matter lymphedema and the sick, who would otherwise be cut off from any news about it, so how the association is acting as the database, to select through its scientific Committee, the reports received, with respect to reference centers for the treatment of lymphedema to ensure appropriateness and quality of performance. We cultivate a hope, on behalf of the silent and suffering multitude of primary and secondary lymphedema patients, that this Congress can spread a message loud and clear, even with the signing of a joint document to be addressed to WHO, by medical specialists and researchers, physiatrists and physiotherapists, together with associations to protect those suffering from lymphedema, to be disseminated to the media, so that the WHO will undertake the most appropriate and incisive initiatives to engage parliamentarians more sensitive to the right to health and to equal opportunities for patients, especially if disabled and rare diseases, to formulate, discuss, consider and vote within their respective National Parliaments a standard that commits governments to All States to mandatory assistance and research of rare diseases and lymphedema in particular , to disseminate knowledge and to eliminate disparities in the treatment of patients with this disease, including the number of Member (lymphedema is recognized and treated very well by the Health Services of Austria, France and Germany).
We want to wish that this authoritative and Qualified Assizes International, which has always shown sensitivity towards the sick and availability of our pathology, can fully accept this our appeal for a cause that we believe in justice and fairness.
With the assurance of our deep gratitude and appreciation.
Syracuse, 15.09.2013
Prof. Sandro Michelini, President of the Scientific Committee
Francesco Forestiere, President
Nunzia Tramparulo, Co-Coordinator Lazio Region
Tiziana Di Vito, Co-Coordinator Lazio
