Multiple Sclerosis Around the World

Looking at MS around the world, the Multiple Sclerosis International Federation is an international organization offering support and advocacy for those with MS throughout different countries. Their initiatives include communicating information about MS to a global audience, especially where there is little MS support. They also work and coordinate with other MS organizations to advocate for research efforts and campaigns to help those living with MS, including World MS Day each year. They have several member organizations throughout different countries, and act as an international hub of MS information and support.

With MS affecting individuals throughout the world, it is imperative to have an international resource in place to turn to when information, support, and advocacy are needed. Through publications, newsletters, and weekly MS research updates, the MSIF offers those with MS increased awareness of the disease and its impacts. The group provides an opportunity for those countries without much MS awareness to receive additional support and resources.

As MS continues to be researched and investigated across the world in regards to its potential origin and treatments, the MSIF stands as a pioneering network to keep those in MS communities around the world apprise of new developments.

For more information about the MSIF, visit their website.

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August 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

August Artist of the Month:
Jennifer Attwood – Parker, CO

 Jennifer Attwood - My Little Piece of the Ocean in Colorado.

About the Artist:

“I have RRMS and was diagnosed with MS in 2007. I have received a much-needed ice vest and the approval of assistance with my brain scan MRI. I have taken up watercolor art media in the last year, 2013. A gift from my sister was a fantastic collection of brushes and paints. I have had many careers and led a very active life until I lost my job in 2009. I have a studio degree in Art education, but didn’t fall back on my degree until 1995…”
Read more

Be inspired – please send an online card featuring artwork by MS artist Jennifer Attwood and spread awareness of MS and MSAA.

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Adding Up MS: Hey, What Does That Number Mean?

Two doctors looking at brain MRI

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

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