I am one in a million. Literally. Or rather, I should say that I am one of the million.
Earlier this year, the National MS Society released a study that says nearly one million people in the United States are living with multiple sclerosis, which is more than double the original estimate of 400,000.*
One million! The number blows my mind! There are one million people in the United States living with MS and I am one of them. This disease is not as rare as once thought, and chances are, you know someone affected by multiple sclerosis.
So who are we? Who are the million?
Technically speaking, we are likely to be between the ages of 20 and 50 when we are diagnosed and we are two to three times more likely to be female. We can be of any ethnic group but are more likely to be of northern European ancestry. We are most likely to live in areas of the earth that are farthest from the equator, and we join with our brothers and sisters in the rest of the world to make up 2.3 million people living with this disease worldwide.
While we all have the diagnosis of MS in common, the disease presents so differently in all of us, and often is called the “snowflake disease” because it varies greatly from person to person. MS attacks and short circuits our central nervous systems leaving scars on our brains and spinal cords. We experience symptoms such as fatigue, spasticity, numbness, walking difficulties, vision problems, weakness, vertigo, bowel and bladder problems, pain, cognitive changes, mood swings, and depression…and those are just the tip of the iceberg. We can also experience sexual dysfunction, speech problems, difficulty swallowing, tremors, and headaches. Yes, living with MS is no picnic.
However, I’m proud to say that there is a bright side to this disease and that is the people living with it. People living with MS are some of the most resilient and strong people that I have ever encountered! We live with the unpredictability of MS and we fight daily to have as normal of lives as possible. Yes, we will get knocked down often but we always find a way to get back up.
We’ve had to discover a new way of living that some don’t understand. There is a saying that has circulated around social media that states: “you don’t get MS until you get MS.” Of course, I think that probably can pertain to any chronic illness in that you don’t really understand it until you are actually trying to live with it.
I am proud to say though that MS does not hold us back. There are so many people living with MS doing extraordinary things with their lives. We each fight the disease in our own unique ways, but most importantly, we support each other in our individual battles. We are all striving to help one another and to overcome the obstacles that often accompany MS. We all understand and can relate to the bad days but we also revel in and celebrate our good ones. There is no greater celebration than to hear about one’s positive MRI results or check-ups! In that positive news, we are all victorious.
I think we’ve made great strides and important medical discoveries concerning multiple sclerosis in the past few decades. MS is definitely not the disease it used to be but we still have a long way to go. There are too many people affected by multiple sclerosis and there is still so much more that we need to learn. There is still no cure for MS, just band-aids in the form of disease-modifying therapies that aim to hold off progression.
March is MS Awareness Month and raising awareness is all a part of that greater journey on our path to a cure. I will keep sharing information, keep fighting, and I will never give up on hope. One day there will be a cure and I will join the 999,999 other people in the U.S. as we shout out and proclaim, “WE USED TO HAVE MS!”