Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. We know that.
It is estimated that approximately 2 million people in the world have multiple sclerosis and about 9,000 of them live here in Ireland. We know that too!
While the exact course and combination of symptoms that any one person living with MS will vary, we can all say that we live within the same ‘boundaries’ of this disease. That is to say, we may all be travelling in different lanes, at different speeds and in different vehicles but we’re all on the same M50 of multiple sclerosis, no matter where in the world we are making that journey. We’ve all figured that out as well.
What is different, however, are the circumstances, conditions and lifestyles that people from around the world travel on the MS highway.
The global nature (and inequality) of living with MS has come into better focus for me. In the nearly four years since I moved to our remote corner of Kerry from Seattle, USA, I have had the opportunity to meet people living with MS from over 28 countries and from five different continents.
We are all the same, but our commonalities often end at national boarders and regional thresholds. There is a massive effort underway to gauge these inequalities and improve the standard of care and services for those in direst need, while advancing research for better treatments and a cure.
I am just back from presenting to a conference of online health advocates and bloggers called HealtheVoices in Chicago and will be off next month to Prague to speak at an International MS Patients’ Summit. I have seen first-hand the international similarities and differences, groups like The European MS Platform (EMSP), the Multiple Sclerosis International Federation (MSIF), the International Organization of MS Nurses, the Consortium of MS Centers and other groups are actively seeking ways to make all of the roads of the MS journey passable.
In the last few years Ireland and MS Ireland have played an important role in raising both the bar and the floor in this regard.
At the beginning of this month, for example, the International Progressive MS Alliance met in Dublin to assess progress and chart the organisations next important moves and my first experience with the International MS Patients’ Summit was in the Big Smoke as well!
Much is happening around the world, much of what is happening in that world is passing through Ireland and the people of this country living with MS can be proud to know that we are not only being heard but that our voice is being sought as well.
When I look at films like 'When I Walk' or 'MS Under Pressure' or read comments on my MS Facebook page, I see that the experience people have with living with MS varies as much as the symptoms of the disease itself.
I am grateful that I have had the opportunities to live my life with MS on my own terms… as much as the stupid disease will allow. Because of that, I feel it is important that we work towards that day - until the day we can all exit our MS journey – so that the road we all travel is equally smooth, our vehicles have parity and that no one lane outpaces the others in fairness, kindness and compassion.
Wishing you and your family the best of health.
Cheers
Trevis
Trevis' book, Chef Interrupted, will be published in the Ireland next Spring. Follow him on the Life With MS Facebook page, on Twitter, and check out his website.
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