I Have Complicated Feelings About Rare Disease Day

I Have Complicated Feelings About Rare Disease Day
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With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?”

Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely qualified to comment on the concept of rarity. However, I struggle to wrap my arms around this initiative. Of course, I’m speaking figuratively. I can’t wrap my arms around anything. I’m rare that way. But in all seriousness, I’m a bit put off by the question and find it odd. I also find the mission behind Rare Disease Day unclear.

Why are we asking what makes people rare? Why have we dedicated a day to observing “rarity”? Are we trying to raise awareness, or are we trying to celebrate our rarity?

In my opinion, rarity is not inherently good. Most of my rare qualities are in no way worth celebrating. My body doesn’t work. I require assistance with nearly every physical task. I’m rare because I can’t scratch my head or wipe my bottom, I guess.

The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on people’s lives. That I can get behind. But it seems to me that asking what makes people rare is more about celebrating rarity than raising awareness for it.

Perhaps a better way of observing Rare Disease Day is to acknowledge the progress we have made and identify areas in need of improvement.

We have grown leaps and bounds in terms of treatment options for SMA. Spinraza (nusinersen) was approved a few years ago, and alternative treatments such as Zolgensma (onasemnogene abeparvovec-xioi) and Risdiplam (formerly RG7916) are seemingly on the horizon. No treatments existed for SMA when I was a kid. We weren’t even sure if treatments were possible. While I’ve yet to enter treatment, I’m hopeful that I will, eventually.

In my mind, airplane accessibility is a significant area of improvement. People still cannot stay in their wheelchairs during a flight. It’s wild to me that airplane accessibility has slipped through the cracks, but I was delighted to learn that the organization All Wheels Up is partnering with RARE Courage, the nonprofit arm of BioNews Services, to address the issue.

I’m confident that we will see better airplane accessibility at some point. I can only hope it’s by September 2021. The Oregon Ducks will play the Ohio State Buckeyes in Columbus, and my friend says he can get me a ticket. Please, airlines, I’m begging you.

I hope I brought a practical approach to Rare Disease Day and gave you some food for thought. I’m honored to be part of such a strong community. Remember to celebrate the progress we’ve made and continue to advocate for change when necessary.

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Note: SMA 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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