A diagnosis of maculopathy it involves different reactions, from disbelief to discouragement, up to anger. With the aim of providing some suggestions for dealing with the situation and managing these feelings, but also to help the family member or caregiver to truly be of help and support to their loved one, thevirtual event ‘You can save your sight – The expert answers’, promoted by Bayer on the #SalvareLaSightSiPuò Facebook page. Now in its second edition, the event is part of the project of the same name, dedicated to people with maculopathy and their caregivers, to shed light on the various issues related to these pathologies, from diagnosis to treatments and their management.
Among the maculopathies – recalls a note – the Age-related macular degeneration (AMD) is the leading cause of vision loss in industrialized countries globally. In Italy it is estimated that more than 500 thousand people are affected by it and around 50 thousand new cases are recorded every year. The treatment of maculopathies has significantly improved in recent years, with the introduction of anti-VEGF drugs (administered via intravitreal injections), which have proven effective in stabilizing or even improving visual acuity, as well as the quality of life of patients. But a fundamental element for the success of the therapy is the involvement of the patient himself in his own treatment path and in the knowledge of the tools necessary to deal with it.
“In case of maculopathy – he states Alessandra Capovani, psychologist and psychotherapist at the Visual Rehabilitation Center of the Chiossone Foundation in Genoa – in addition to addressing vision impairment, it is important to consider the patient’s psychological well-being. In fact, progressive visual impairment leads to severe emotional distress; the feeling of losing control over one’s life, a lowering of the level of self-esteem, the loss of autonomy or in any case the need to depend on others, the accentuation of feelings of isolation and loneliness and a maladjustment that can lead to depression. We must not overlook – he adds – the value of being close to people with maculopathy. It is important not to leave them alone, because empathic support, in addition to medical therapies, can make the difference. For this reason, the role of the caregiver becomes fundamental, as does her psychological well-being.”
Among the topics raised by the public stand out: maintain autonomy in daily life; difficulty asking for help; trust in your doctor and in medical progress, and therefore the importance of following the prescribed therapeutic path. “From these signals – observes Guendalina Graffigna, full professor of Consumer and Health Psychology, director of EngageMinds Hub – Consumer, Food & Health Engagement Research Center, Catholic University of the Sacred Heart – we understand how a person affected by maculopathy has a tendency to withdraw into himself. In these cases the risk is that this isolation leads the patient to turn to means such as the Internet to get answers to their doubts”, exposing themselves to the risk of fake news. “It is necessary to give space – adds the teacher – to reliable news through captivating methods such as those of social media, to contribute, with the right information, to having greater awareness on the topic”.
Those who suffer from maculopathy “often experience loneliness and isolation in their daily lives – he highlights Massimo Ligustro, president of the Macula Committee – The possibility of being able to compare, albeit virtually, with people who have the same problem and experts who can give, in real time, an answer to one’s questions instills a feeling of greater security and self-confidence, and this facilitates the path towards greater autonomy and independence”.
Knowing that you have to undergo continuous treatment for your entire life “can scare the patient – he underlines Massimo Nicolò, head of the Medical Retina and Maculopathy Center of the Ophthalmology Clinic at the Policlinico San Martino hospital in Genoa – This aspect, combined with the lack of autonomy in going to visits, can lead to a reduction in therapeutic compliance, with consequent worsening of the disease. This means that the patient must not be left alone. When a diagnostic and therapeutic path is started, the doctor must take charge of it for an unlimited amount of time, so to speak.”
Launched in March 2020, the campaign #salvarelavistasipuò has 5,737 people registered on the dedicated portal (salvarelavistasipuo.paginemediche.it/), while there are 54,986 users of the Facebook page. Through the paginamediche.it platform, created to facilitate the doctor-patient relationship, the page https://salvarelavistasipuo.paginemediche.it was created, which offers multimedia content and interactive tools useful in the process of understanding the pathology and managing the therapeutic plan.
“Web solutions applied to communication in the healthcare sector – he declares Monica Zurria, Medical Lead Ophthalmology at Bayer – have significantly promoted the dissemination of information and knowledge, improving patient awareness and facilitating the doctor-patient relationship. Progressive visual impairment causes heavy emotional distress for the patient. Bayer has always been attentive to patients’ needs; for this reason, in addition to proposing increasingly innovative and effective therapeutic solutions, you demonstrate particular attention to aspects that revolve around the pathology and which are equally important for the person’s well-being, including psychological balance. This project – she concludes – is therefore part of a multidisciplinary field, aimed at creating a rehabilitation path for the patient.”
#Maculopathy #save #sight #brings #clarity #patients #caregivers