Picture this – you’ve just been diagnosed with MS and you’re bursting with questions. What treatment can I access? What will it cost? Are there any services in my area? How do I tell my family? Will I be ok? The trouble is you don’t know who to ask, or even where to start. Navigating a post-diagnosis world can feel like a maze, especially if services are disjointed and MS isn’t well known.
Esclerosis Múltiple Uruguay (EMUR) knows this all too well. Data collected for the Atlas of MS in 2020 shows at least 659 people living with MS in Uruguay, recent information from EMUR suggests this number could be higher. The MS organisation has seen many people with MS struggle to access support in Uruguay. EMUR saw the need for clear guidance, a roadmap to the national healthcare system and a trustworthy source of MS information. That’s why they’ve created the MS Compass, a digital tool to help people understand and live better with MS. The Compass is designed as a companion to life with MS in Uruguay. It offers advice on everything, from accessing treatment, preparing for an appointment, or explaining MS to loved ones. The website uses clear and simple language that’s easy to follow. Anyone can use or access the resource, wherever they are in their MS journey.
Karina Barrera says the MS Compass has helped her manage life with MS.
‘I have been able to share the MS Compass with loved ones and colleagues so they can learn about MS. This relieves the stress of educating more people about MS, making it possible to focus on my own understanding and acceptance of life with this diagnosis. The MS Compass provides links to connect with EMUR and healthcare providers. It even shows the correct forms for accessing different DMT’s in Uruguay, as well as tips for navigating the great labyrinth of our healthcare system. So far, it’s been a great tool to count on. The MS Compass understands its patients and walks with them towards a better quality of life. It answers many questions, and reminds us that we are not alone on this path.’
Neurologist Valeria Rocha also thinks the MS Compass is a useful tool for healthcare professionals.
‘As a neurologist, I am very excited to have a tool like the MS compass in my country. I think it will help healthcare professionals guide people affected by MS to reliable information about MS and our healthcare system. It has very valuable and accessible information on relevant healthcare procedures and forms. It is, without doubt, a great help for any MS consultation.’
The MS Compass was co-designed by a working group of people affected by MS, volunteers and neurologists. MSIF has been involved with the project since 2018, funding the initiative as part of its capacity building work. The MS Compass launched in October 2021, making national headlines.
EMUR representative Andrea Prato sees the MS Compass is a ‘living tool’ that requires close collaboration with the MS community. EMUR hopes that the compass will continue to develop, becoming more tailored to the needs of each user as it grows.
The MS Compass is the first resource of its kind in Uruguay and indeed Latin America. EMUR believes this project can inspire others in the region and across the world.
‘What inspires us most is the possible scalability and replication of the MS Compass to other medical conditions and geographic contexts. EMUR trusts that the MS Compass will promote greater autonomy in people with and affected by MS.’
To find out more, visit the EMUR’s MS Compass here: https://brujulaem.uy/sitio/