“There is an image that sometimes comes to mind: I am hospitalized but I still don’t know why. I only know that I feel very tired, and I have suspicious swelling in my legs. A doctor, like every morning, checks the inside of my eye. It’s very white, she tells me. It’s my first encounter with anemia.”
The first white paper on chronic kidney disease
Cristina’s is the first testimony one encounters when reading the book presented yesterday at the Ministry of Health on chronic kidney disease anemia, a condition that affects 90 percent of patients with renal failure, created with the patronage and contribution of the Italian Society of Nephrology (SIN), of the FIR (Italian Kidney Foundation) and of the patient associations active in the area: AIRP – Italian Polycystic Kidney Association ETS, ANED – National Association of Hemodialysis, Dialysis and Transplant APS, ANTR – National Association of Kidney Transplant recipients ODV ETS, Association of Kidney Patients APS, ASPNAT – Association for the Study and Prevention of Nephropathies Alto Tavoliere ONLUS. A burden to lighten together, says the title. Because in fact this is what it is: a condition of chronic, unhealthy tiredness. A burden that prevents simple daily activities, which it is difficult to even talk about. Because to describe it, given the non-specific symptoms, it is even difficult to find the words, and to tell friends and relatives why you can’t take a simple walk in the countryside, or feel too tired to go to the cinema or out for dinner.
In addition to patient testimonies, the book also collected the voices of clinicians, nephrologists but also cardiologists, diabetologists, general practitioners and nurses, institutional representatives and experts who retraced the different phases of the patient’s journey, from diagnosis to treatment up to to long-term monitoring and management of chronicity. A management that needs to be improved in various aspects: for this reason, patient associations have also formulated some considerations and operational proposals to be addressed to institutions, scientific societies, companies in the sector and the world of communication, to positively impact the therapeutic process .
Five points to improve management
First of all, we ask to promote awareness of anemia, an underestimated and underdiagnosed complication. Better awareness on the part of general practitioners and patients, the associations write, would allow them to detect symptoms when they emerge and therefore be able to act in time, reporting when necessary in a timely manner to the nephrologist specialist. For this reason, it would be appropriate to promote specific training for general practitioners and organize information and education campaigns for patients and their caregivers.
Raising awareness of this condition means taking decisive steps towards early diagnosis. In fact, intercepting anemia at its onset makes it possible to postpone the deterioration of the patient’s quality of life. Which – the Associations continue to ask – must be managed in a multidisciplinary manner, with the help of various professionals. In addition to the nephrologist, the support of the general practitioner, the cardiologist, the endocrinologist, the psychologist, the specialized nurse, the nutritionist is necessary, in a systematic approach that also sees a better hospital organization and greater collaboration between local medicine and specialist. Finally, the Associations conclude, it is important to take charge of patients with chronic kidney disease that is homogeneous throughout the national territory: all patients must be able to count on global assistance for their condition, regardless of the region they belong to.