If you are reading this then you are most probably already aware of MS – the zaps and pings, the constant feelings of being off-balance, the numbness and so much more. We are also all too aware that those things we feel for the most part are internal and not visible to those around us. The challenge is to make the world aware of MS and the need for research and support, but that is awfully hard to do when there is no one single identity for Multiple Sclerosis.
Yes, there are many of us who need a wheelchair, walker or cane to get around but there are even more people with MS who don’t need an assistive device to help get around on our own. Being in a wheelchair doesn’t mean the person has MS anyway, because there are many reasons to need that type of assistance device. The same can be said about walkers and canes.
There is not a particular face of MS - women have it more than men, but MS affects both sexes. Race doesn’t figure into the bigger picture because even though it was originally thought of as a disease for people of Caucasian descent, there are a lot of African-Americans and a growing number of Hispanic people also being diagnosed with MS.
Can we be known by our age? Young children with MS are rare but they are known in the medical community. The typical age of an MS diagnosis would be in the 20-40 year old range, but then again, there is a large number of people, including me, who were diagnosed well into their 50’s and 60’s.
There are easily 400,000 people in the United States with Multiple Sclerosis, and it is now estimated there are over 2 million of us world-wide. There is no membership card or secret handshake to help us identify ourselves as members of this club and certainly no distinguishing features or traits to let the rest of the world pick us out of the crowd and understand the far reach of MS.
Then how do we go about raising awareness of MS when we are so hard to spot in the crowd of all the people with other worthy causes and diseases out there?
We need to seize our moment – the calendar says March is MS Awareness Month and it’s our turn to ramp up the cry for attention. We can write letters to our local newspapers advocating for better services for our community’s members where needed. How about an email or letter to our Congressional representatives urging them to support funding for the National Institute of Health (NIH) and scientific research to find the cause and cure of MS, which has been cut to the bare bones. We can pick up the phone and call the Multiple Sclerosis Association of America and volunteer to help their efforts to organize community events or make telephone calls of their behalf.
I’m never shy about talking to anyone who will listen to me about MS and I hope you aren’t either. As we educate others, often one person at a time, we continue to add to the awareness of this disease. Finally, don’t forget to get out the orange and wear it, that’s our MS awareness color and we can certainly use that shade to make us stand out in any crowd.
How do you raise awareness ? I hope you will share your ideas - we are always looking for new ways to get the word out about MS whether it is March or any other month of the year.
Wishing you well,
Do you ever experience MS bloat?