What is the Atlas for?
The updated Atlas of MS covers three key themes: the epidemiology of MS, the resources available to diagnose and treat the disease, and the support available to people with MS in 124 countries around the world.
The main aims of the Atlas are to:
- stimulate additional systematic data gathering, particularly data on the epidemiology of MS
- highlight gaps in resources and services
- encourage the development of much-needed policy, services and training.
What are its main findings?
The Atlas of MS 2013 shows:
- The estimated number of people with MS in the world has increased to 2.3 million (up 9.5% from the 2008 survey).
- Women are twice as likely to have MS as men, although in some countries women are three times as likely to have MS.
- Up to 5% of people with MS develop it before the age of 18, and the new Atlas of MS provides data on the prevalence of MS in children.
- The number of neurologists worldwide has increased by 30% and the provision of MRI machines, which are key to early diagnosis and treatment of MS, has doubled in the past 5 years in emerging countries.
- Disease-modifying therapies for MS are partly or fully funded by governments in 96% of high income countries, but funding drops to zero in low income countries.
How reliable are these statistics?
Data sources for the 2013 survey are more robust than in 2008. Ninety two countries (accounting for 79% of the world population) provided prevalence data in 2013. Forty seven of these countries (51%) provided a reference to at least one published peer-reviewed paper reporting the results of a local or national epidemiological study, while another 18 (20%) referred to a register (local or national) or study that was not published in a peer-reviewed journal.
Where possible the statistics submitted were checked against published data and, where there were discrepancies, we contacted the individual who submitted the data in order to reconcile the different figures.
The estimates for the epidemiology of MS that were provided by the countries participating in the Atlas survey were conservative, and are likely to have been substantially lower than the real figures in many countries with less developed healthcare systems, due to under-diagnosis and under-reporting.
Was it always known that children could get MS?
Although multiple sclerosis has been described and named as a neurological disease in adults for well over 100 years, it is only in the past few decades that it has been recognized that MS can occur in children too. More and more physicians consider this as a possible diagnosis when presented with symptoms consistent with central nervous system demyelination.
How much is known about MS in children?
Knowledge about the incidence, diagnosis and clinical management of pediatric MS has expanded significantly in the past 10-15 years as research and dissemination of data has increased among the medical community.
In 2007, an International Pediatric MS Study Group was founded with the support of several MS societies. The group has published consensus statements about the diagnosis and clinical care of children with MS and the most promising avenues of future research. Research into possible genetic and environmental factors that may cause MS is an area of special interest in this field as it could yield valuable information about the development of MS in adults.
What’s the difference between relapsing and progressive MS?
Most people with MS (85%) are initially diagnosed with relapsing remitting MS (RRMS), where symptoms appear (relapse) over a short period of time, lasting between a few days and a few months. The symptoms then resolve (remission), sometimes for a long time. In progressive MS, there is a gradual accumulation of disability, with or without superimposed relapses. Up to 80% of people with RRMS will eventually develop progressive MS (secondary progressive MS). A small percentage will develop progressive MS from the outset (primary progressive MS).
What is the connection between eye disease and MS?
Optic neuritis is a medical term that describes inflammation of the optic nerve. It may cause a complete or partial loss of vision. The cause is unknown, and believed to be multi-factorial. In some cases, optic neuritis is one of the first symptoms of MS, but not all people who have optic neuritis go on to develop MS. Optic neuritis is also a characteristic feature of Neuromyelitis optica (NMO), also known as Devic’s disease, which is an autoimmune condition that shares many of the clinical features of MS.
There is limited data on NMO, but it is more common in some regions. For that reason, the MS International Federation has been working with people with affected by MS and NMO in China to build a sustainable support structure in that country.
The Atlas says that, in some countries, three times as many women as men get MS and that Iran is one of these countries. Does having to cover and therefore have less contact with the sun and absorption of Vitamin D explain this statistic?
There is no simple answer. The reasons for the higher ratio of MS among women relative to men in certain parts of the world are most likely to be related to the complex interplay between genetics and the environment. While reduced sun exposure and consequent decreases in vitamin D levels might be a factor in some countries, substantial increases in the female to male ratio of MS have also been observed over the past few decades in countries where there is no tradition of women covering up.
What improvements for people with MS did the 2008 Atlas bring about?
The 2008 Atlas found that Ireland had the lowest number of neurologists per head in the European Union. MS Ireland used this to persuade the Irish government to increase this and, by 2013, the number of neurologists in Ireland had increased from 14 to 34.
We have also seen an increase in the number of countries in the Eastern Mediterranean with MS support groups, and in the availability of information for people with MS.
What is the MS International Federation going to do with the findings of this report?
We are encouraging all our members to use the report, and the more detailed data on this website, to call for improved diagnosis and treatment of MS and improved information and resources for people living with MS.