Coinciding with the World Day for ALS, Vall d'Hebron Barcelona Campus Hospital will host a conference on 21 June about this neurodegenerative disease, aimed at patients with ALS treated at the Multidisciplinary Unit of the hospital. The event has a clinical and research scope, but will also provide visibility and importance to patients and their families, and caregivers, through the life and work of one of those affected, the artist Benet Rosell Sanuy.ALS is caused by a degeneration of neurons in the brain and spinal cord responsible for controlling muscle strength. Consequently, patients have a rapidly progressive paralysis that affects the ability to speak, swallow and breathe. The first symptoms of the disease may be nonspecific, such as fatigue, muscle cramps or the presence of Fasciculation in the arms or legs. Other symptoms include weakness in the hands and feet and trouble walking, and a quarter of patients have initial symptoms as trouble speaking and/or swallowing.Dr. Jose Gamez, coordinator of the ALS unit of the Hospital and of Peripheral Nervous System Diseases research group, says that "the diagnosis of the disease is not easy," especially in the early stages. "There is no single specific test and can take up to a year to confirm the diagnosis of the disease, after a pilgrimage of examinations and visits to multiple specialists," he explains. Although there are exceptional cases, such as physicist Stephen Hawking and some forms of family ALS, most people with ALS live just five years after experiencing the first signs of the disease. This survival, however, may increase with the techniques of mechanical ventilation, particularly the invasive one.Currently there is no effective treatment able to cure or stop the progression of the disease. Scientists however, are optimistic after the success of the campaign of the Ice Bucket Challenge two years ago. According to Dr. Gamez, "continuous fundraising from foundations (especially in the United States and England) to investigate the ALS will allow us to find a definitive treatment for the disease." Patient careOnce the diagnosis is confirmed, ALS patients are monitored quarterly in multidisciplinary specialized units, such as the Vall d'Hebron University Hospital. The professionals of these units monitor changes in patients' functional capacity such as motor, swallowing, communication and respiratory function, and analyze the psychological impact of the disease on patients and their caregivers, and changes in their social and family situation. Once these parameters are studied, they are offered programs of rehabilitation exercises, physiotherapy, therapy to prevent gagging, speech therapy, aids to extend mobility, supplements to meet nutritional needs, or even alternative systems to oral feeding.Moreover, in certain stages of the disease new methods of communication are required. In these cases, it uses computer technology and engineering techniques that allow the patient to talk or move the wheelchair by using joysticks or mice adapted to the hand, foot, chin, or eyelid movements eye.ALS Multidisciplinary Unit of the Vall d'Hebron University Hospital was founded in 2013 and has recently been accredited as a Reference Centre of the National Health System and is part of the European Reference Networks (Ernst) for neuromuscular rare diseases. Dr. Gamez has attended more than 1,000 patients since it began its work dedicated to the care and research in ALS in 1994. In Catalonia it is estimated that there are nearly 500 people involved, and each week three new cases are diagnosed. For Dr. Gamez, at the moment, "multidisciplinary care units are the best weapon to combat this devastating neurodegenerative disease" because in one visit, the patient receives comprehensive care, specialized and multidisciplinary. ALS ResearchDr. Jose Gamez has over 20 years experience in the research of this disease. His laboratory team focuses its research on the molecular mechanisms of ALS, and genetic mutations of the familial predisposition or modify the phenotype. They also focused on finding effective biomarkers in blood and cerebrospinal fluid, in order to evaluate new drug candidates for treatment. On the conference of June 21, Dr. Maria Salvadó, neurologist and researcher of the group, will present the latest advances in the research of the disease. http://www.vhir.org/portal1/seminari.asp?contentid=189066&s=activitats&t=Jornada%20Commemorativa%20Dia%20Mundia%20del%20ELA Read the program of the scientific conference on this link