eSCAping Type 1

Purple Carrots, Stonehenge, Ataxia, Bismuth Crystals, Albino Alligators…

Betcha each of these seemingly-random-things relates to today.

BECAUSE – you guessed it! – today, February 28, marks Rare Disease Day 2021.

For me, Rare Disease Day was the first time I publicly acknowledged having SCA (via a 2018 Instagram post). It was also the day I recognized the importance of social media and realized there were other young adults dealing with Ataxia, too. 

Through that #rarediseaseday hashtag, I was faced with the horrible realization that there are SO MANY diseases out there, affecting SO MANY people. But I was also, honestly, inspired. These people were so open, honest, and willing to #shareyourrare to create awareness. It’d only take me a year or so to follow in their footsteps handprints.

Since Ataxia affects about 150,000 people in the U.S., it’s considered rare. The subtypes (SCA, FA, Episodic…) alienate us even more. But Awareness Days help bring us together.

Going off on a slight tangent… 

When my dad passed away (in 2015, on his 52 birthday, from SCA1) so many middle-aged people genuinely believed the best way to offer condolences was to tell me they knew EXACTLY how I felt and could easily relate because their own parent had just recently passed away, too.

It’s kind of like when I pass by an elderly person using the same walker as me. I smile to be polite, they smile like we’re in a secret club. 

It’s tough because relating to someone is a great way to offer support. No one wants to feel alone, so we automatically search for similarities as a way of comforting.

But literally everyone’s dad dies at some point. (Sorry to be so blunt about that.) And if he got to walk you down the aisle at your wedding, and go to your 30th birthday celebration, and meet his grandkids, then please don’t act like we went through the same EXACT thing.

I’m not saying my problems are worse – believe me, I wrote a whole post on that – but they are different.

Now, obviously, not everyone lives with a rare disease. So there’s a weird sense of unity that bonds spoonies. Despite our very different diseases and experiences, we are all dealing with something most people don’t understand. Living with a rare disease can be lonely, and scary, and confusing. But also kind of empowering.

Along those lines, The Mighty is probably one of my favorite websites. Technically, it’s a “digital health community created to empower and connect people facing health challenges and disabilities” where contributing members can upload essays, pictures, and videos to over 600 various ‘communities’ like Chronic Illness, Disability, and of course, Rare Disease. 

But this anonymous user’s review is exactly why I love it so much:

“How is it that I read an essay on The Mighty and it is the only place in the world where I feel truly understood? Time and time again you speak to me through your contributors. I read this headline and it could have come from my very lips…I wanted to say thank you – words can never express how truly grateful I am to the author for sharing her story, for all Mighty contributors, and to The Mighty itself. You have changed my life. I have made a close friend who lives many miles away because of our shared pain. I gain insight every day and I finally, finally do not feel so alone in this world. Thank you. Bless you!”

Basically. I highly encourage YOU to explore any of the posts/websites I’ve linked or mentioned throughout this post. They’re all interesting and worth your time, I swear.

Beyond helping those with rare diseases feel less isolated, the whole point of Rare Disease Day is to raise knowledge and support. So, do your part by learning more & spreading awareness!

To end this post, let me throw some #RareDiseaseDay facts at you (taken from their website):

– 1 in 20 (over 30 million) people will live with a rare disease at some point in their life.

– Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. 

– A disease is defined as rare in the U.S. when it affects fewer than 200,000 people (in Europe, it’s 2,000).

– There are over 7,000 identified rare diseases around the world.

– Rare Disease Day began in 2008, when events took place in just 18 countries … Now, events are being held in over 100 countries.

– Rare diseases are “represented” by a Zebra Stripe design, (#ShowYourStripes) since the black and white pattern is unique & show both individual specificity and unity.