#duradash2022 spotlight: Team (Un)bearable

June 3, 2022News

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Cosmo and Team (Un)bearable shared their thoughts with us about how they plan to participate in #duradash2022 for today’s #duradash spotlight

Visit the Team (Un)bearable page to see updates on their progress and give your support!

#duradash spotlight: Team (Un)bearable mascot — (Un)bearable is a spinal CSF leak awareness mascot personally designed by Cosmo, a spinal CSF leak patient and participant in this year’s #duradash. (Un)bearable is a small bear with the attributes of a cup. His fluid leaks out of his straw when he moves, causing pain and discomfort. Despite this, he has a positive attitude and always wants to lend a paw to help cheer up anyone who’s feeling down. His name (Un)bearable has a dual meaning: *unbearable* for the excruciating pain and diminished quality of life that comes from having a spinal CSF leak, and *bearable* because leak patients are so strong and manage to struggle through and find relief… but we shouldn’t have to bear so much in order to get proper diagnosis and care!

About Cosmo

I had just turned 17 when I started leaking. I had two patches when I was 19 that provided short term relief, and I’ve been patched since late April of this year! (I’m currently 20.)

what are you doing for #duradash2022?

My friends and I have formed a team for #duradash. We are doing charity livestreams of video games on Twitch. We’re also raffling off some really cool handmade goods, such as a crochet brain hat with a detachable spine scarf and even some crochet (Un)bearables! I also am opening up a Redbubble shop for the duration of #duradash, where I will be selling stickers and t-shirts with (Un)bearable on them. (All proceeds will then be donated to the Spinal CSF Leak Foundation!)

#duradash spotlight: A crocheted brain and detachable spine scarf to be given away during #duradash2022 — Crochet brain hat with detachable spine scarf

#duradash spotlight: A crocheted version of Cosmo's spinal CSF leak mascot that will be given away as a prize during #duradash2022 — Crocheted (Un)bearable mascot

What do you want people to know about spinal CSF leak?

Not only are spinal CSF leaks under-diagnosed, but it is very difficult to get adequate treatment for them without traveling cross-country or even in some cases to another continent! There are very few places that know how to perform large volume blood patches for imaging-negative patients, forcing already very sick people to wait for months and travel large distances in order to get care. We need more access to the care we need, and the only way for that to happen is to have more experts equipped to perform large volume blood patches and other treatment all over the world.

What research on spinal CSF leak do you hope to see in future?

Many, many people have CSF leaks that are not detectable with current imaging technology. While many of us are still able to find relief through large-volume patches, it would be much less taxing on us physically (in the sense of needing less blood injected) and mentally (in the sense of having to convince medical professionals to give us the treatment we so dearly need despite the lack of positive imaging) if more kinds of leaks could be found through non-invasive imaging techniques.

Thanks, Cosmo and Team (Un)bearable!

Check out their #duradash2022 page for progress updates or to support their efforts here!