WORLD MS Day was in May, and there was a lot of speaking out about Multiple Sclerosis on the web, via twitter and all sorts of media outlets, but there are a lot of voices not being heard. We know there are at least 2.3 million people living with MS but where are they? Perhaps the answer is echoed in their year’s theme, ACCESS, which according to the sponsors is “not just physical access, but also access to drugs, information and treatment, and the same social and economic opportunities as everyone else. We’re asking people to think about barriers to access in their life and to make a wish for something that would help overcome those barriers.”
Many people know they have MS and then find a way to get on with living their daily life and tuck away the knowledge they have MS, only dealing with it when confronted with health problems. They are part of this number. Then there is the group of people who immediately go into denial when they receive the diagnosis of multiple sclerosis – it’s easy to do with relapsing/remitting MS in particular because early on, when you feel good you tend to forget how bad you felt before. This group would rather not even say MS out loud, let alone be proactive in their care. I know about this group because they pop up with stories such as “I was told ten years ago I had MS, but I didn’t believe it but now I can’t feel my legs…” Sadly the reality of having MS usually comes back and smacks these folks with a big wakeup call. They are counted, too.
All over the world there are people doing the best they can to live with their MS, but for a variety of reasons they can’t get treatment. Whether it’s the lack of knowledgeable MS doctors, insurance systems that restrict access to ongoing care, or just not enough money to take care of themselves, there is a large MS population that lives day-to-day just hoping to not get worse and unable to do anything at all to try to prevent that from happening.
Finally, there are you and me; since you are reading this blog, that clues me in that you are actively learning about MS, and probably trying to find the best way to control it so it doesn’t dominate your life. We want to be active in our own care and learn more about the larger MS world and make a difference, and World MS Day challenges us to step it up one more notch. Take the time to learn more about the world view of MS and not just our own particular slice here in the US.
There are an estimated 400,000 American who live with MS. Another 100,000 Canadians also have this disease. Estimates say over 600,000 Europeans have MS, including 100,000 people in the UK. That adds up to only about one-half of the 2.3 million people around the world who have Multiple Sclerosis. So what about the other million or so – where are they and what is being done to help them?
You can get a very insightful look at the prevalence of MS around the world and the types of treatment, access to care and other demographics through the Atlas of MS 2013, a publication put together by the Multiple Sclerosis International Federation (MSIF). It helps us to better understand where those other people with MS reside, the lack of access for care and other associated issues.
Ninety five different countries contribute to the data collected by the MSIF, and it illustrates the disparity of care available. It primarily depends on the wealth of the country – here is the US we have the most neurologists per capita, the greatest access to MS drugs (10 known disease modifying therapies are approved for use here with more in the pipeline), the highest ratio of MRI machines and of course, the largest patient support networks. All of this information is in the Atlas of MS 2013, in an easy to understand format.
So what might have been MSing for this year’s World MS Day? There are some obvious questions such as -
What is the cause of MS?
What will cure MS?
How do we heal the people who are infirm because of their MS?
We are also missing the representation of those people who are undercounted and under served with their MS. When we work to bring greater attention to our individual needs, it is also an opportunity to bring attention on behalf of other people with MS who remain MSing from the conversation and care. I hope you will take the time to learn more about the global picture of MS and continue to speak up for all of us - you can start by visiting the home page for the Multiple Sclerosis International Federation . WORLD MS day may be past but the need to advocate has not gone away.
Wishing you access,
How well do people around you understand MS?