Multiple sclerosis (MS) is a central nervous system disorder that an estimated 2.3 million people around the globe live with. To help us understand this often unpredictable condition and life with it, we interview Alexandre Guedes da Silva, the director and vice-president of Multiple Sclerosis Society of Portugal (SPEM).
SPEM is a member organization of the broader European Multiple Sclerosis Platform (EMSP), an association founded in 1989 in order to make sure the patients with multiple sclerosis diagnosis have a voice in determining health policies and research goals on the European level. Currently, the platform relies on “a growing network of 40 member societies in 35 European countries”.
Engineer by profession, Silva is not only an advocate trying to raise awareness about the disorder, but also a patient himself, living with remitting-relapsing MS for decades. Answering Kim’s and Alessia’s questions, he shares his personal experience with MS symptoms and thoughts on what society could do about the quality of life among patients with MS, while also touching upon the current ideas about what causes MS.
Kim Baden-Kristensen is the co-founder and CEO of Brain+, a digital therapeutics company that helps people with brain disorders and injuries to recover their fundamental cognitive brain functions and daily life capabilities by using an app-based cognitive rehabilitation platform, which is developed in close collaboration with patients, clinicians and researchers. https://www.linkedin.com/in/kbadenk/
Alessia Covello is a life science IT consultant working in the field of healthcare technology implementation, and advocating for better services for people with brain conditions and learning disabilities.
https://www.linkedin.com/in/alessiacovello/
Talking points:
● Multiple Sclerosis - basic information (min. 3:35-10:10)
- What if the multiple sclerosis diagnosis arrives too late? (5:15)
- Current theories and different forms of the disease (6:10)
- Phases of the disease (8:05)
● How it begins and how difficult it is to diagnose MS (min. 10:35 - 17:00)
● Living with multiple sclerosis symptoms - situations to avoid (min. 17:20-26:30)
● Available treatments and the role of EMSP (min. 26:45-32:00)
● Possibilities for neurorehabilitation and similarities between dementia and MS (min. 32:10-35:20)
● Digital technologies and robotics as assistive technologies for patients with MS: improving the quality of life through widespread communication technologies (min. 35:27-39:40)
● Improving research and data-collection (min. 39:50-42:40)
● Distribution of MS - geographic, genetic, and lifestyle factors (min. 42:55-48:45)
● Overall quality of life: Physical rehabilitation, job adaptations, personalized approach (min. 48:55-51:10)
● Take-home messages for researchers, clinicians, and patients (min. 51:20)
Disclaimer:
All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to inform, rather than promote or advertise. The podcast authors do not receive financial compensation for any of these references.