On the occasion of World ALS Day (June 21st), last Tuesday, June 20th, the event “Unzué and Sant Pau, a team against ALS” took place at the Modernist Site, featuring the participation of Juan Carlos Unzué, Dr. Ricard Rojas, neurologist, researcher, and coordinator of the ALS Functional Unit at Sant Pau, and Esther Sellés, director of the Miquel Valls Catalan ALS Foundation.
In a relaxed and enjoyable atmosphere, the event unfolded as a conversation between Juan Carlos Unzué, Dr. Ricard Rojas, and journalist Cristina Puig, with the incorporation of Esther Sellés, director of the Miquel Valls Catalan ALS Foundation.
At the beginning, a video was screened showing a routine visit by Juan Carlos Unzué to the Hospital de Sant Pau, where he was diagnosed in 2018 by the ALS Functional Unit led by Dr. Ricard Rojas. Due to the specific needs of the unit’s users, the team consists of different profiles, including neurologists, nurses, pulmonologists, rehabilitators, speech therapists, dieticians, social workers, and psychologists. Thanks to this multidisciplinary team, a comprehensive approach to the disease is achieved, providing the most complete assistance and treatment to patients, meeting their main goals of rapid diagnosis and decision-making focused on the specific needs of each patient.
During the conversation, various important issues related to the disease were addressed. Both Dr. Rojas and Juan Carlos Unzué agreed that the moment of diagnosis is one of the most crucial. On one hand, as Dr. Rojas explained, it is “the moment when the doctor-patient relationship is established,” a relationship that will be key throughout the entire process. As a doctor, Rojas explained that it is also one of the most challenging moments and that to do it as best as possible, it is essential to know the person who will receive the news, once again highlighting the importance of providing the closest and most humane care possible. The following video shows Dr. Rojas explaining how to deliver the diagnosis news for ALS.
Juan Carlos Unzué, from his point of view, explained that the warlike and fighting terminology often used in the disease is not the most appropriate. Instead, he said, “if I had to give advice to a person recently diagnosed with ALS, I would tell them that the most important concept is acceptance.” Sometimes many patients go through a stage of denial, but Juan Carlos Unzué emphasized that accepting the disease has allowed him to make the most of the possibilities in the new situation that the diagnosis placed him in, and thus, enjoy life to the fullest within the circumstances. This is one of the reasons why he has become a role model for many other people affected by ALS, and the following video is the best proof of how attitude towards the disease is essential.
After much experience in addressing and researching this disease, Dr. Rojas, who is also a researcher in the Neuromuscular Diseases Group at the Research Institute of the Hospital de la Santa Creu i Sant Pau – IIB Sant-Pau, states that “ALS is not a single disease, but the end stage of many different alterations that cause this high variability of symptoms and progression among patients.” Therefore, “in future research and approach, it is crucial to identify these alterations and classify patients into subgroups according to the typology they present in each case. Knowing what types of alterations cause neurodegeneration will allow us to offer more personalized treatment and also open new research avenues that will enable us to develop treatments capable of radically changing the course of the disease, which we do not have today and is crucial.”
Finally, the event concluded with interventions from some of the attendees, ALS patients, caregivers, and companions, who shared their experiences with Juan Carlos Unzué and the rest of the audience. In this video, you can watch the entire event from beginning to end on June 20th.
