TOturn the spotlight on sclerodermaa disease that is still poorly understood, and provide to patients accurate information also on new therapeutic frontiers. This is the intent of the campaign “Scleroderma is ours too”(www.sclerodermia.info) promoted by GILS, Italian Group for the Fight against Scleroderma, LISS, Italian Systemic Sclerosis League And AMRER, Emilia-Romagna Rheumatic Patients Association with the unconditional contribution of ITALFARMACO.
Scleroderma: what is it?
Systemic sclerosis or scleroderma is one rare systemic progressive disease, that hits in women predominate. It is estimated that in Italy the pathology affects almost 30,000 peopledeveloping mainly between 40 and 50 years old, although its most serious form can manifest itself between the ages of 20 and 25. Specifically, it is one connective tissue disease which involves the skin, blood vessels, heart, lungs, kidneys, digestive system (gastrointestinal tract) and the musculoskeletal system.
A autoimmune disease, in which the immune system mistakenly attacks healthy body tissue resulting in hardening and thickening of the skin. The first name derives, in fact, from the combination of two Greek words, “skleros”, what does it mean “hard” and which describes one of the main symptoms of the pathology, e “dermis”, that is to say “skin”.
Two different shapes
However, it is important to know that they exist two main subtypes of scleroderma: the Limited cutaneous sclerodermacharacterized by localized and mainly fibrosis limited to hands, arms and facea form that is not deadly but can still cause significant disruption to the changes which determines to the appearance of the skin. And the Diffuse cutaneous systemic sclerosis that hits a large area of skin e can influence blood circulation and compromise one or more internal organs.
The causes are still unclear
Despite the progress made in scientific research, i mechanisms underlying Systemic Sclerosis they remain unclear. For this reason the pathology represents in many ways still one considerable challenge. As regards the therapythere is no definitive cure, but Different drugs can be used adapted to the needs of each patient. In general, the purpose of treatments is to relieve symptoms, prevent worsening of the disease, treat any complications such as pulmonary hypertension, and maintain efficient the use of the affected partslike the hands.
Scleroderma: new treatment paths
Scleroderma it is therefore a very complex disease which can have a significant impact on people’s lives who suffer from it. Information and early diagnosis they can make a difference but not only that. In fact, they exist today innovative treatment paths, also possible to domicile thanks to telemedicine, telemonitoring and integration between hospital and territory. And it is precisely on these aspects that the initiative intends to shed light, also through the testimony of patients “Scleroderma is ours too”.
«The objective of the Campaign is bring out clearly ‘the voice of patients’ and concretely evaluate the heavy involvement that the disease implies in daily management of the person and the family unit” – declares Mariabeatrice Elvano, Spokesperson for the Italian Systemic Sclerosis League – LISS. «Being an active part of this campaign means something to us contribute to helping patients that every day, due to the complexity of the disease, they find themselves facing motor, pneumological, cardiological and psychological difficulties» – also adds Paola Canziani, President of the Italian Group for the Fight against Scleroderma – GILS.
The testimonies
«Since 2015 I have been diagnosed with progressive systemic sclerosis – says Beba, who received a late diagnosis, after 6 years – I am being treated at a Roman hospital where I periodically carry out my week of infusions. I doI am very lucky because I live near the hospital, so I can go back and forth for those 6/7 hours a day of infusion. However, there are many people who face up to two hours by car every day to be able to come to the hospital for therapy.”
Currently i treatment paths provide Indeed care at hospital level and theuse of fixed or wearable devices.
«To date, patients come to our center managed in hospital with the aid of wearable devices in the presence of a nurse or a doctor, so that they can intervene in case of need – explains Massimo Reta, Director of SC Internal Medicine for Rheumatology – Ospedale Maggiore “CA Pizzardi” in Bologna – In addition to our hospital hubs, we have available 16 local offices, in some of which we have started experimenting with the relocation of patients in charge of our structure achieving our objective, i.e allow patients to go to their district, reducing the travel time from your home to the place of treatment. An option that has allowed us to increase adherence to therapy in patients who in this way are able to follow their treatment path.”
Help from telemedicine
For patients who, due to physical conditions or logistical problems, are unable to reach the reference facility, they also exist today home care coursesmade possible precisely from hospital-territory integration and telemedicine which allows you to remotely monitor patients.
“The The concept of home as the first place of care must become a reality thanks to telemedicine – underlines Sergio Pillon, Vice President of AiSDeT – Italian Association of Digital Health and Telemedicine. – This procedure in fact represents a great opportunity, so much so that even AIFA (Italian Medicines Agency) has recognized its value by authorizing domiciliation routes for hospital drugs, according to the doctor’s assessment».
The new therapeutic frontiers
«The progress achieved in recent years has allowed us to move from the need for bedside management to the possibility of use a wearable device and sensor to control parameters remotelythus allowing not only one greater patient mobility but also, where the requirements allow it, home care – he also states Antonino Mazzone, Director of the Medical Area Department – ASST West Milanese. – This ‘new’ therapeutic path allows more comfortable handling and that adapts to the needs of patients, a true model of integration between the hospital and the territory favored by technologywhich opens a new era for the fight against scleroderma».
Being able to do the treatment process at home
«When I started therapy in hospital I couldn’t accept having to lie down in a bed. I didn’t accept seeing other patients who were worse off than me… – says Alessandra That he received the diagnosis at the age of 28 and who had a lot of difficulty accepting the disease -When they proposed doing the therapy at home I was one of the first to accept. At home it was easier: I didn’t have to lie down, I was more independent, I could help the children with their homework. I was no longer hospitalized. AND for a 28 year old girl not being hospitalized is an achievement.”
Treatment paths still not homogeneous
If they new therapeutic frontiers therefore allow us to improve the quality of life of patients with scleroderma, but it must be underlined that unfortunately in Italy they are still affected by significant territorial differences: these are treatment paths not yet homogeneous and standardized in all regions but more often linked to local initiatives.
An image from the campaign “Scleroderma is ours too”
The importance of networking
The added value of the campaign “Scleroderma is ours too” it is therefore the will to relate and create one network between patients, experts and associationsso that we can truly improve the quality of life of those living with scleroderma.
On the site scleroderma.info in addition to information on the disease, from symptoms to diagnosis, also a focus on treatment paths and the testimonials from expert doctors and patients.
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