The patient with amyotrophic lateral sclerosis (ALS) lives “with many physical, practical and bureaucratic difficulties. I am one of the luckiest, because in any case I have a therapy and hope. Those who don’t have this live with difficulty, with fear, with the feeling that there is no way out.” Claudio Cresta, councilor of the Italian Amyotrophic Lateral Sclerosis Association (AISLA) Lazio, said this during a talk broadcast on adnkronos.com during which the data from the ‘What Als Wants’ study on the ALS Registry, a database which collects data on patients’ illness history, to better understand the needs of patients and the caregivers who accompany them during their illness.
The project, promoted by Aisla in collaboration with the Mario Negri Institute and the Ministry of Health with the aim of improving research and accelerating the development of new treatments, is “an aid, a help, a support for ALS patients – explains Cresta – to be able to escape from isolation, from loneliness”, it is “a support structure and in any case be able to tend towards something that gives hope for the future, for the present and for the future”.
On the effectiveness of the new therapies, Cresta states that there are “definitely” improvements “because, while before the impression was of being on a downward slope, therefore even everyday life was conditioned to that, now we see a path right, we see the possibility, I won’t say of healing, because obviously it’s not possible, but living and making plans – he concludes – is important”.
#Cresta #Aisla #difficulties #living #ALS
