Multiple Sclerosis is Lacking Public Awareness

MS Public Awareness

What Will It Take to Make MS a Household Name?

The Ice Bucket Challenge was no doubt a huge success in raising money for ALS, Amyotrophic Lateral Sclerosis, or also known as Lou Gehrig’s disease. I couldn’t turn on a television or any social media device to see someone getting ice water dumped over the top of them; so I give a big hat’s off to the person who started this awareness for this horrific disease. As much research that is needed for ALS, I am thrilled that they raised as much money as they did along with bringing the needed attention to it. Just this week, I saw yet another type of awareness “act” being brought to the forefront, by taking a selfie of yourself when you wake up. I was so focused on the pictures of what people looked like when first waking up that I didn’t hear what disease was trying to be mentioned. I guess the success of what happened with the ice bucket challenge is trying to be repeated for other diseases/disorders by doing something off the wall.

This is all great and I am not trying to be difficult about any of this, I am just wondering when and how will the same recognition be brought to everyone’s attention about Multiple Sclerosis? After blogging now for a year, writing about everything I can think about associated with this disease, it still amazes me how limited knowledge is about MS even within the community of those who actually have it. Last week at church I was introduced to a gentleman who was visiting, and the person making the introduction mentioned to him that I have MS. He politely looked at me and said, “I know this disease by watching The Young and The Restless”. Since I don’t watch this show, my only knowledge was that an actress on it was diagnosed with it. Still not sure if she is only acting she has it or if she really has MS and they put it into the script. I nodded and mentioned that I was aware of the show but that I didn’t watch it. I do get excited to see a prime time show or even a movie that has someone in it that has MS so that it brings much needed awareness. That leads me to the next question, Why are there never any commercials about our disease? You would think that one of the pharmaceutical companies would push one of their medications on television; or at least have an information packet about Multiple Sclerosis available for the public to receive.

I find myself looking over different news agencies, newspaper articles, and other sources for any new information that is out there and how available is it to the average reader or person just watching television and they are rare to see. I see commercials on so many other diseases, why not MS? My husband is a big NASCAR fan and a couple of years ago I remember seeing a car with Copaxone on it and learned that the racer of that car actually had MS. That is no longer advertised on any race car now. If you are wondering why this is an issue to me let me explain. It never ceases to amaze me how family or even close friends of someone who has MS to mention that they met another person who has our disease; but still compare their loved one to the other person as to what they can or can’t do. The comparison drives me crazy because it tells me that everyone with MS are equals, and that just isn’t the case. MS is different in each and every person and the severity of it depends on not only how many lesions you have but where they are located. One individual may have RRMS and still works a full time job and is able to carry on with life feeling almost normal. Someone else may have PPMS and be in a wheelchair and can barely make a statement without slurred speech and require help with everything. Of course there are all the different stages in between that vary according to how you respond to your treatment and again how many lesions you have and where they are located. Multiple Sclerosis is a difficult disease that has many different outcomes, but most people unfamiliar with it, just views it as everyone fitting under that one label.

I’m not sure if it is lack of time or lack of interest that is responsible for our loved ones not wanting to learn as much as they can about what we suffer with. If it is this hard for those we know to learn about MS, how can we expect others who do not have direct association with MS want to know anything at all about it? The only way the public will learn about MS is if it is introduced into their world through social media which includes television. Now the next question is, who should be responsible for make this public awareness? Is it the MS Foundation, or the Pharmaceutical companies?

I don’t have the answer to this question, but my hope is that one day soon, I will turn on my T.V. and see a commercial about MS demonstrating different levels of progression describing the symptoms during prime time shows. Of course it will have a 1-800 number associated with it providing everyone with the ability to receive information they can receive by email or by regular mail. I will be happy when I see that MS is as widely advertised as Psoriatic Arthritis or even Rheumatoid Arthritis. At least their foundation has made their diseases a household name along with current available treatments for it. Until then, I suppose word of mouth is our only option to spreading news about Multiple Sclerosis.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.