How ALS patients can show their stripes for Rare Disease Month
1 in 10 Americans is a rare disease 'zebra'
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For most people, February is a month filled with hearts and flowers. But for me, it’s all that plus a vibrant display of ALS zebras and a splash of green, pink, blue, and purple.
Zebras? You might wonder what a striped animal has to do with a neurological disease like ALS. I’ll certainly explain, but first, give me a moment to share what I experienced during my first year of learning how to live with this diagnosis.
Following an anxiety-filled afternoon with my neurologist in 2010, I left the office with the depressing news that I had ALS. I spent the next few weeks in a blur, attempting to learn everything I could about the disease. Yet, beyond the cold medical explanations and clinical brochures, I yearned for something deeper: I needed to talk to a fellow patient.
A support group meeting was weeks away, so someone at my ALS clinic gave me the name and phone number of another newly diagnosed patient. When I called her, we shared tears, empathy, and the details of our diagnostic journeys. When we said goodbye, I felt a momentary sense of relief, but I still felt lost. I didn’t know what to expect or how to discuss my changing symptoms with my friends and family. I was looking for a road map that didn’t seem to exist.
Over time, I began to find my way by meeting other patients online who, like me, were navigating this new reality. We chatted about our daily challenges, shared practical tips, and “showed up” for one another. I began sharing my wellness training, offering advice on maintaining a positive mindset and performing simple, adaptive exercises.
Seeing how much they appreciated these insights spurred me to start my ALS and Wellness Blog and eventually begin writing for ALS News Today. I felt a deep sense of pride in establishing a positive presence in the ALS community. My goal was — and still is — to ensure that no one else has to feel as alone and overwhelmed as I did in those early days.
The power of the pack
We are rare, but we are many. ALS is among the thousands of serious conditions that make up the rare disease community. In 2017, there were about 25,000 people living with ALS in the U.S. That fact startled me because that is roughly the entire population of my little community.
While rare diseases can feel incredibly isolating, there are actually about 300 million people worldwide living with a rare condition. Although our symptoms and treatments differ wildly, when we come together, we become a powerful voice demanding global awareness. I’ve come to recognize that while we may be rare individually, as a collective, we are a force with clout.
Why the stripes?
February is Rare Disease Month, and Feb. 28 is Rare Disease Day. This is a globally coordinated movement wanting equity in healthcare, social opportunities, and access to life-changing therapies. Separately, it is difficult to make the world listen to our competing organizations. But together, under a large umbrella that fights for all of us, we can move the needle faster.
This brings me back to the zebra. The zebra is the official mascot for rare diseases, representing the need to look for the unexpected. I’m told that medical students were once told that when they “hear hoofbeats,” they should look for horses, not zebras. In other words, look for the common diagnosis, not the rare one.
Today, we are flipping that advice. We know that 1 in 10 Americans is actually a “zebra.” Our conditions might not be obvious just by looking at us, which is why we “show our stripes” to raise awareness. The vibrant pink, green, blue, and purple colors of Rare Disease Day represent the beautiful diversity of our community.
No matter what your specific stripe is, we can help each other learn to live well. This February, let’s make some noise. Let’s go, zebras!
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 about ALS.
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