Atlas of MS – a Powerful Tool for Information and Advocacy

A bit of a different post from me today, but one that I thought was important to highlight 🙂

Have you heard of the Atlas of MS? I hadn’t until I made links with the Multiple Sclerosis International Federation (MSIF) for World MS Day 2020 when I treated you all to my singing voice in the Global MS Choir. When the MSIF told me about the Atlas of MS, I thought it was such a good idea; the data that it collects – the number of people around the world with Multiple Sclerosis and demographic information such as age and gender – can allow us to look at changes over time and, importantly, allow us to advocate for better healthcare and support in a timely way. The Atlas of MS also reports on the Clinical Management of MS; its report is due in 2021.

The Atlas of MS has actually produced three reports thus far – 2008, 2013 and now 2020.  It takes information not from the literature but from individual countries so that their experts and organisations can provide the most up-to-date findings.

Atlas of MS – An Advocacy Tool

As someone who was diagnosed with relapsing-remitting Multiple Sclerosis at a young age (I was 15 years old at the time of diagnosis but actually had my first identified symptom – optic neuritis – 2 years earlier), I find the information of worldwide rates and the demographics so interesting.  The Atlas of MS has found that there are now, in the UK alone, 7,700 children living with MS. It is unclear whether this number is rising, as the amount and way in which data collection has changed over the years, but knowing important numbers such as these can really help for changes to be made to ensure the right support and treatment is given at the right time.  Children are now encouraged, for example, to use a Disease Modifying Drug (DMD) to try and reduce relapse rate and stall the onset of disability; in my case, I was not given the option due to lack of knowledge/experience of MS in paediatric populations.

Read: My Experience of Having MS as a Teen

What Else Do We Know?

The 2020 study allows us to look at the Multiple Sclerosis information per country; below, for example, are the United Kingdom stats.  You are able to compare these to other countries and find similarities and differences.

One thing that I noticed whilst reading the Atlas of MS is that although 87% of the world’s population was covered in the epidemiology aspect of the report, there were still 80 nations that did not take part.  These tended to be countries with small populations and/or without a specific organisation for MS.

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I’m really looking forward to learning more about the clinical management for MS; I really do feel that looking at MS in a global context can help to raise awareness of MS, ‘best practice’ around the world and to keep abreast of any significant changes over time for more accurate identification and treatment.

If you would like to learn more about the Atlas of MS, please do consider having a look at the website here, where you can download the report and sign up for future mailings.

Have a fab week everyone!

Love and light,

Young Carers Action Day 2022