Why We Still Need More ALS Awareness

Did you know that May has been ALS Awareness Month for the past 30 years? Yes, that’s right, 30 years.

Some probably think ALS awareness activities began in 2014 with the ice bucket challenge. At least that’s when many first pronounced the letters A-L-S before dumping a bucket of water over their heads. But chances are those same drenched participants didn’t really know what ALS was.

Heck, I didn’t know what ALS was when I received my diagnosis. I’d never heard of it before. Talk about a cause with lack-of-awareness issues! ALS continues to be a misunderstood mystery disease, not only for patients and their friends and family, but also for the medical and research communities.

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The perceptions of those around us

For most ALS patients, symptoms start out small and vary from person to person. We blend in, unnoticeable in a crowd, and we often fall into the category of, “Gee, you don’t look sick.”

Other than having a pronounced limp, my initial ALS symptoms were for the most part invisible to others. At one point, a well-meaning friend whispered in my ear, “Don’t worry, you don’t even look like a person with ALS.” When did having ALS require a certain “look”?

Maybe my friend was expecting me to roll into the room loaded with technology, à la Stephen Hawking. Thanks to the media, that seems to be the look associated with ALS. Except ALS doesn’t have only one look — we patients have a thousand looks.

I can’t fault my friend. The variety of symptoms and points of origin are a challenge to most patients when they’re asked to describe what type of ALS they have. In addition, swallowing, walking, and breathing are affected, but our ability to hear is still intact.

This misconception about hearing hit home for me once at the grocery store, when I met up with a person I hadn’t seen in a while. Obviously unfamiliar with ALS, they greeted me by talking very loudly and overly enunciating their words. As I watched, I wondered if I should play along and answer in the same loud way or risk their embarrassment by stating that my hearing was fine. Thankfully, I didn’t have to decide, as we both had to move along and quickly waved goodbye.

Patients have misconceptions, too

For patients, confusion about having ALS often begins at the doctor’s office. I was shocked to realize the words improve, rehabilitate, and recover were missing from my conversations with members of my ALS clinic team. There was a lot of empathy and support, but the cold truth was that they couldn’t fix me.

The same feelings of surprise surface when we’re told the ebbs and flows of symptom progression make it difficult to create a definitive long-term medical plan. Instead, we’re told, “Let’s wait and see if anything’s changed in a couple of months.”

Thank goodness for support groups, online forums, and more, where we patients can connect and learn from one another.

The current state of ALS stats

ALS was first identified in 1869. Now, 153 years later, we still have no prevention or cure. ALS affects 450,000 people worldwide. Together, we could qualify as a large city! What I find most interesting is that experts estimate that roughly 1 in every 400 people will develop ALS in their lifetime.

An estimated 30,000 people are living with ALS in the United States at any given time. Every 90 minutes, someone is diagnosed with ALS.

So while we focus this month (and all summer) on ALS awareness and fundraising activities, let’s work toward expanding public perceptions about what ALS looks and feels like and what it’s like to live with ALS.

Spread the word. We want to live well in a world without ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.