Adnkronos (Adnkronos) – "The diagnosis of a rare disease, especially mucopolysaccharidosis, is a serious one. When families receive such a diagnosis, they are naturally disoriented and destabilized. They find themselves in a state of complete uncertainty because it is a rare disease and, like all rare diseases, they had never even heard of it before."
Valeria Ranzi, vice president of the Italian Mucopolysaccharidosis Association (AIMPS), said this at the presentation of the documentary "Vite in Campo." The film, produced by Telomero Produzioni with the unconditional contribution of Chiesi Italia, premiered at the Rome Film Festival.
“As much as doctors and hospitals can provide information, there is still a moment of panic and serious difficulty.
The association makes itself available and is essential precisely at a time when the family feels essentially alone in the face of an unknown illness, which they don't know how to manage and cope with," Ranzi continued. "In this sense, the association is useful and essential for new families."
"The family that has just received the diagnosis—because it is truly a family and not just the patient—can connect with many others who are already experiencing this reality, who have faced it before them and who can therefore offer help," Ranzi explained.
"The association also provides information, support, and assistance with all the bureaucratic aspects, including healthcare, INPS, and all the tools that can help these families," concluded the Aimps vice president.
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