Zaragoza becomes the national epicentre of Myasthenia with the celebration of its XVIII Congress
Valencia, February 23rd, 2025. More than a hundred patients with Myasthenia Gravis and Congenital, relatives, and health experts have held this weekend in Zaragoza their XVIII National Congress of Myasthenia organized by AMES, Myasthenia Association of Spain, and which this year has had as its motto "Sharing knowledge, promoting collaboration".
Myasthenia is a rare disease, of unknown origin, chronic and disabling in many cases, which attacks the junction between the muscle and the nerve, causing weakness and fatigue in the skeletal or voluntary muscles of the body.
According to the Spanish Society of Neurology, about 15,000 people in Spain suffer from Myasthenia. Currently, these people face multiple challenges, including late diagnosis, difficulties in accessing appropriate treatments and a lack of coordination between different levels of care.
Myasthenia has an impact on all areas of the lives of affected people, hence the need for a multidisciplinary and coordinated approach between different social and health professionals that favours the exchange of information and clinical experiences between specialists in neurology, primary care, ophthalmology, nursing, emergency medicine, speech therapy, physiotherapy, immunology and psychology, among others.
Once again, the XVIII Congress, which has had the social endorsement of the Spanish Society of Neurology and has been declared a training activity of Health Interest by the Autonomous Community of Aragon, has established itself as a key meeting point to improve the care and quality of life of people with this neuromuscular disease.
During the Congress, held on February 22nd , new treatments and relevant clinical trials in Myasthenia were discussed. Among the outstanding presentations, Dr. Carmina Díaz, head of the Neurology Service of the Dr. Balmis General University Hospital, presented the latest research on new treatments and relevant clinical trials in Myasthenia and pointed out "we are facing a very promising present and future, with new treatments that will significantly improve the patient's functionality and quality of life".
Another long-awaited presentation was the project "research on the detection of antibodies in seronegative patients of Myasthenia Gravis by flow cytometry", led by Dr. Fabián Pablo Tarín Rodrigo, head of the Haematology and Hemotherapy Service of the Doctor Balmis University General Hospital in Alicante and presented by Ms. Paula Piñero Romero, Coordinator of the Advanced Diagnosis and Precision Medicine Group of the Institute of Health and Biomedical Research of Alicante (ISABIAL), who have explained how this advance could improve the accuracy in the diagnosis of the disease.
Dr. María Bestué Cardiel, a specialist in Neurology and member of the Neuromuscular Unit of reference of Aragon, presented the Multidisciplinary Unit of Complex Diseases of Aragon, as a model of good practices in the care of patients with Myasthenia.
The presentation "The Importance of Speech Therapy in Myasthenia", was given by Ms. Noelia García Serrano, specialist in Orofacial Motor Skills and Neurology and head of the Speech Therapy Service at AMES. During his speech, he highlighted the fundamental role of speech therapy in improving breathing, swallowing and speech in affected people, offering tools to optimize their quality of life and prevent complications.
In addition, the Congress included training workshops, such as Cognitive Stimulation, led by the Professor of Psychology and Principal Investigator of the “Neuroemotion” Team of the University of Deusto, Mr. Imanol Amayra Caro; a practical Speech Therapy Workshop, focused on improving breathing in people with Myasthenia, led by speech therapist Noelia García and a meeting with family members "The importance of the family in the care of the patient with myasthenia: a contribution from nursing" led by Ms. Teresa Valdés Menor, Nurse Case Manager of the Neurology Service of the Dr Balmis University General Hospital in Alicante.
One of the most relevant moments of the Congress has been the celebration, for the first time, of a Scientific Block, a space for exchange and reflection that has brought together 15 professionals from the social and health field. Specialists in neurology, immunology, psychology, occupational therapy, primary care medicine, optics and specialized nursing have shared knowledge and proposals to optimize the approach to Myasthenia. The members of the AMES Scientific Committee participated in person: Dr. Carmina Díaz Marín, Head of the Neurology Service of the Dr. Balmis University General Hospital in Alicante; Dr. Antonio Guerrero Sola, Neurologist at the San Carlos Clinical Hospital; and Dr. Teresa Sevilla Mantecón, from the Neurology service of the University and Polytechnic Hospital La Fe in Valencia. They were accompanied by Dr. Gerardo Gutiérrez Gutiérrez, Neurologist at the Infanta Sofía University Hospital in Madrid; Ms. Teresa Valdés Menor, Nurse Case Manager of the Neurology Service of the Dr. Balmis General University Hospital in Alicante; Dr. Anaís Mariscal Rodríguez, Specialist in Immunology, Autoimmunity, Neuromuscular and Quality at the Sant Pau Hospital; Ms. Juana Ruiz-Escribano Díaz-Pintado, Psychologist in Behaviour and Health of the Association of Neuromuscular Diseases (ASEM Madrid); Mr. Andrés Gené Sampedro, President of the College of Optometrists of the Valencian Community; Dr. Paola Martínez Ibáñez, President of the Spanish Society of General and Family Physicians of Aragon (SEMG-Aragon); Dr. Almudena Marco, Secretary of the Regional Board of SEMERGEN Aragón; Ms. Leticia Porrero Rodríguez, Vice-President of the Official College of Occupational Therapists of the Valencian Community; as well as the members of the AMES Board of Directors. Neurologists from various hospitals accompanied us online.
Zaragoza was also the place where the patient community had a space for meeting and mutual support on the day prior to the Congress, where the National Meeting of People with Myasthenia took place. Patients and relatives participated in workshops focused on well-being and disease management, thus strengthening the exchange of experiences and shared learning.
The Meeting on Friday 21st began with a workshop on volunteering in AMES, given by Ms. Raquel Pardo Gómez, president of AMES; it continued with a workshop on stress and Myasthenia and another on "Self-care for people who accompany in Myasthenia", both led by Ms. Beatriz Hernández Pérez, General Health Psychologist and head of Psychological Care at AMES. Young people with Myasthenia also had their own space facilitated by Ms. Cristina Aragón Ibáñez, Coordinator of the youth group and delegate of Catalonia. A workshop was also held on the "MG-ADL Quality of Life Questionnaire"; given by Ms. Teresa Valdés Menor, Nurse Case Manager of the Neurology Service of the Dr. Balmis General University
Hospital in Alicante, in which it was explained how to complete it and its usefulness in the monitoring of symptoms.
In addition, innovative initiatives were presented at the workshop on projects, where Ms. Laura Gutiérrez Nicuesa, Mr. Alberto Gil Yágüez and Ms. Raquel Aizpurua López spoke about collaborative projects with AMES.
Finally, the workshop on the 360º Approach to Myasthenia Gravis, given by Ms. Raquel Pardo Gómez, president of AMES and Mr. Francisco J. Campos Lucas, Vice-Dean of Postgraduate Studies and Institutional Relations of the Faculty of Medicine of the Francisco de Vitoria University, presented the different factors that influence the quality of life of affected people. from the clinical impact to the economic and social.
THANK YOU NOTE
From the Myasthenia Association of Spain (AMES), we want to express our most sincere gratitude to all the people and entities that have made possible the celebration of the XVIII National Congress of Myasthenia and the Meeting of People with Myasthenia.
First of all, we would like to acknowledge the health and social specialists who have accompanied us and have shared their knowledge and experience with great generosity. We know that you have used your free time to be at the Congress, and we deeply value your commitment to improving the approach to Myasthenia. Without their involvement, this Congress would not have had the same impact.
We would also like to thank the support of the institutions and companies that have collaborated with AMES, contributing to making this meeting a success. Their support has allowed us to continue making progress in making Myasthenia visible and improving the quality of life of those living with this disease.
And, of course, our most special thanks go to the patients and relatives who have actively participated in this Congress. Their effort to travel to Zaragoza, their interventions and their enthusiasm demonstrate, once again, the importance of generating these spaces for meeting, learning and mutual support. They are the engine of AMES and the reason why we continue to work every day.
Thank you all for being part of this collective effort. See you in the next edition!