“Women diagnosed with ovarian cancer are patients who undertake a very complicated and difficult treatment path because in 80% of cases the disease is detected at the third or fourth stage, therefore already very advanced. The treatments are demanding and we hospitals with which we work in agreement, we are at their side. These patients want to be understood with active, but above all empathetic listening. They ask for psychological and also bureaucratic support, but they are also attentive to the recreational and beauty aspect we created the ‘IO despite everything’ project, dedicated to beauty, skin care, accessories, clothing, color management and therefore support from many points of view.” Thus at Adnkronos Salute Sandra Balboni, president of the national patient association Loto OdV which has 8 branches in the most important hospitals as reference centers for the treatment of ovarian cancer.
“Access to treatment is fundamental – explains Balboni on World Ovarian Cancer Day – We at Loto OdV are on the national territory at the reference centres, each with a multidisciplinary team that deals with the pathology and therefore guarantees the presence of an oncologist, surgeon, pathologist, radiotherapist, as well as the intensive care specialist” and a whole series of elements “that also contribute to achieving surgical intervention volumes such as to guarantee extremely high quality expertise. It is no coincidence that the prognosis in the reference centers be better.” For this reason “we tell patients not to go to the hospital near their home, but to go to these places – often far away – which are centers of excellence where it is also possible to do BRCA1 and 2 genetic tests”.
Balboni recalls the objectives of the patient association: “The first aim of Loto OdV is to be alongside scientific research, especially when it comes to early diagnosis. We are very attentive and close to patients with regards to primary prevention, even if early diagnosis would really be able to change the fate of this disease which is normally detected at the third or fourth stage, in fact, we see that the disease is much more treatable so it would really make a big difference many studies which up to now have not produced results, but we have a lot of hope.” And again: “Among our future objectives is to be increasingly present at institutional tables – continues Balboni – where we can make the voices of patients and their families heard”, without forgetting the free activities that Loto OdV carries out in the centers of reference to support women with ovarian cancer: “Acupuncture, yoga, mindfulness, psychological assistance for patients and family members, Nordic walking, cruise trips and holidays”.
Then there is the bureaucratic support. “Often – reports the president – patients tell us that they have great difficulties in the process of requesting civil disability and law 104”, on the “requirements for accessing the economic and social benefits” provided for by these regulations” and on how to submit the application to INPS. “With INPS we are working to facilitate this process and on May 15th there will be a meeting with the institution’s medical examiners and oncologists in order to facilitate the bureaucratic process for these patients”, he concludes.
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