Friday, April 24, 2009

Battling Ignorance and Lack of Education

I was scanning the internet for news on MS today. This is something I do most days, just to keep up on the latest findings, new clinical trials, etc. Today, I stumbled onto what I found to be a very interesting article. The National Multiple Sclerosis Society did a survey to see how much people really knew about MS. It essentially proved what those of us with MS already know- the general population is totally clueless as to what this disease is or does:

Four out of 10 (40%) members of the public could not name a single symptom of MS, which include loss of sight and mobility, fatigue, numbness, bowel and bladder problems, muscle stiffness and spasms.

The poll of more than 2,000 people also found 6% attributed MS to "public health issues" such as obesity, poor diet, smoking or germs.

Meanwhile, four out of 10 (40%) thought all people with MS ended up in a wheelchair whereas just 20% do.

I wish I could say these results shocked me- but they don't. I can not begin to tell you how many people I've come across since my diagnosis with this disease that are truly clueless about it. The fact this survey showed how ignorant the general population is doesn't shock me- the fact that it IS ignorant is what I find shocking. By most estimates, over 2.5 million people world-wide suffer from Multiple Sclerosis. Roughly 400,000 of them live in the United States. Mind you, those are only the diagnosed and documented cases. If you took all the people with this disease fighting for a diagnosis and those completely undiagnosed, some experts guess that would increase the number of people in U.S. with it to at least 500,000. So how is that a disease that effects millions world-wide, and a half million right here in the U.S., can be so grossly misunderstood?

My theory on this two-fold: The symptoms of MS are largely unseen until you progress in the disease, and no one "famous enough" has been diagnosed with it.

To back up the first part of this theory, take me for instance. Right this moment, I do not walk with a limp or have an odd gait. My limbs aren't flailing spastically and I'm not in a wheelchair. If you saw me on the street, I look just like any other mother playing taxi driver to her kids. Yet right this moment, my left hand is tingling and if you really look closely you'll catch my left thumb twitching when I try to grasp things. The left side of my face feels like it has a horrible sunburn, yet I haven't had a sunburn in years. I have a tight, squeezing pain going around my left side. I even feel unbalanced when I walk though I have learned to compensate and hide it well. My brain fog is minimal, though my short term memory is shot. I also have weird itchy and tingly sensations that come and go over my skin randomly. This, mind you, is a good MS day for me. My bad days are much worse and my horrible days are almost unbearable. But my point is- I look perfectly normal. So if I tell someone "I have Multiple Sclerosis", they look at me, and shrug it off figuring it's no big deal because I look just fine. They have no clue what my body is going through despite it's 'normal' appearance.

Now onto the second part of my theory: No one famous enough has gotten this disease. I know that probably sounds insane, if not even a little shallow, but it's true. AIDS became well known back in the 80's because it hit so many in Hollywood, in the 90's it became almost legendary as people like Freddy Mercury died from it and Magic Johnson told the world he was HIV positive. Breast Cancer became a hot topic when more than a few actresses came out about their own battles with it, most recently Christina Applegate. Parkinson's has even come out of the closet so to speak thanks to Michael J. Fox. Now, please don't think I am faulting the activists for supporting these diseases in the least. I am simply pointing out the fact it's not until a disease becomes "trendy" to support thanks to a big name backing it that people start to learn about it. MS has Montel Williams, who has done amazing things to bring awareness to this disease. We also have Terry Garr and Richard Pryor. But really, overall, we don't have anyone that would be considered a superstar. I wouldn't wish this disease on anyone, yet I know as well as I know my own name that should a hot A list celebrity announce in People Magazine tomorrow that they have MS and that person then turns activist- suddenly you'd be seeing orange plastic wrist bands worn as often as pink and yellow.

So, this is my challenge to anyone reading this: Educate yourself, and educate at least other person in your life to what Multiple Sclerosis is. You can scroll through a number of my previous posts to find some information even. Heck, even pass out the link to my blog if you like. But until us average every day folk get the word out and start educating those around us, the majority of the population at large will remain ignorant. They say "ignorance is bliss", and it
maybe blissful for the ignorant but trust me, that ignorance isn't so blissful for people like me trying to live our lives with this horrible disease.

Be well all :)


  1. great article and I couldn't agree more! I have only been diagnosed for about 9 months although they say it should have been years ago. I look perfectly normal, except for a slight issue with balance some days that I can not overcome. I have had complete double vision, extreme leg pains and spasms, and my short term memory is also completly shot. This is a great artclie that I would like to post the link to on my site if that's ok.

    Jay S

  2. Hi Jay,

    Your story sounds like mine- I was diagnosed in October 2008 but they think I've had MS for years before that too. Urgh and the double vision is the WORST. That was the symptom that finally led to my diagnosis. Oh and definitely feel free to post a link on your site- I'm happy to help educate people about what people like us go through anyway I can :)

    Take care! -Mis

  3. Hi Mis,

    I found your blog doing MS research on an art project I'm working on...I'm grateful I found it too!

    I also have MS and reading through your blogs I read that you have itch attacks. Wow, I'm not the only one! ...I thought I was crazy...

    Most doctors aren't even aware of the symptoms MS causes because there are so many different variations for everyone it's hard to keep track.

    I have these itch attacks almost daily, usually my shins and ankles only. There are those occasions that I have the "ant" attack feels like little red ants are running all over my body...yuck! But...What I did find and get was a couple of medications that may help you with your itching. I've been using them for years now and they really do work.


    When I have a bad itch attack, I use the cream and take a pill, sometimes 2. There are days I just need the pill or just the cream.

    Please check with your doctor and ask him/her about the rx's because I really think it will help with your itching.

    Good luck and be well! samsbuddie

  4. Samsbuddie,

    Wow thanks for the Rx info- I'll definitely ask my neuro about them at my appointment in June. Oh and the ants crawling on your body sensation? I can't tell you how many times I've tried to bat a bug off me that wasn't there. I get that one, too. MS sure does suck, doesn't it?

    Thanks again for the info! :D