Jodi Ettenberg
@legalnomads · Canada · joined 10 Sep 2009
Once a lawyer, then a travel and celiac food writer. Now disabled, writing about curiosity, health, and loss.
42 739Followers
8Following
1 560Posts total
16.1KViews on collected posts
Ultimi post
Cerchiamo nuovi post…
An important, informative segment about spinal CSF leak on @globalnews. Thank you to @ella_gmac for in-depth reporting and for sharing patient stories during this year’s awareness week!
753 views · 6 likes
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@ella_gmac thank you for your in-depth, compassionate news coverage of spinal CSF leak - it was wonderful to see a segment that not only discussed the condition’s pathology, but also how it happens and how it predominantly affects women. 💜
178 views · 4 likes
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Happy to read this newly published paper about use of atraumatic needles. An argument against them from hospitals is that they “cost more”, but this article notes a net cost savings when you factor in care needed due to cutting needles: https://t.co/ZgYBzptVWx https://t.co/M9WaPZ
671 views · 8 likes
· 2 reposts · 1 replies
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The best things I read in Dec, incl.
- @OCCRP on a South Pacific ponzi king
- @ferryin280 on contaminated water as a cause of Parkinson’s
- @cbhillstrom on a Texas nurse’s quest to document the life and death of every woman killed by a man in the US
https://t.co/xaAhmdkgbk http
431 views · 0 likes
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@legalnomads Hi. Did you know my Waldenstrom’s is a rare desease? 1,500 a year in USA. My Sister Annie died from Methothelioma of the Peritoneal cavity. Same odds as my desease.
58 views · 1 likes
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@spinalCSFleak @SpinalCSFCanada @csfleakuk @csfleakaware To other patients with this awful condition, I see you & how hard you’re trying to find answers 🤍 I love how we all share findings & new research with each other. It’s a beautiful patient community, truly.
If anyone has qu
472 views · 9 likes
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@spinalCSFleak @SpinalCSFCanada @csfleakuk @csfleakaware I hear from many chronic spinal CSF leak patients who have or develop mast cell issues, so I’m sharing my MCAS page, in case it’s helpful.
I’d never heard of EDS or MCAS before my leak, but it turns out I have both. Treat
2K views · 12 likes
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@spinalCSFleak @SpinalCSFCanada @csfleakuk @csfleakaware As with many rare conditions, patients have to fight to get to centers of excellence and expend their savings trying to do so — and even then, as with my case, it’s not a guarantee. I have EDS and MCAS, and that complicates
319 views · 5 likes
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For more about it, please see:
@spinalCSFleak in 🇺🇸
@SpinalCSFCanada in 🇨🇦
@csfleakuk in 🇬🇧
@csfleakaware in 🇮🇪
Spinal CSF leak is an isolating, debilitating condition with a mechanical basis, yet many patients are told it’s anxiety or stress or hormones or migraine.
329 views · 8 likes
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Had I known then what I know now about needle size/type, & connective tissue, I’d never have consented. But at least I can help inform others. The field has more & more emerging research, & more doctors who are learning about spinal CSF leak—including how it is underdiagnosed.
337 views · 4 likes
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In the years since, I’ve tried to write and share as much as I can, especially my lessons learned, so others can avoid what has happened to me. Recently I shared more of how I live with a chronic spinal CSF leak, including accommodations to my apartment: https://t.co/ZYCRZvgJzZ
355 views · 4 likes
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I have had four rounds of epidural blood and glue patching, but the repairs have not held. The LP that caused my leak had multiple attempts done without fluoroscopic guidance — so surgery isn’t an easy answer, since we don’t know the exact leak site(s).
357 views · 6 likes
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Today is Rare Disease Day, & I wanted to reshare a piece I wrote about mine, a spinal CSF leak that I sustained 6.5 years ago via lumbar puncture. It’s a debilitating condition, & for some cases like mine a permanent or even long-term fix is elusive. https://t.co/fna4m7zewy https
9.9K views · 79 likes
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Growth & engagement
How the posts we collected actually performed: views and reaction rate post by post, what the audience did with them, and where the follower count goes.
Views per post
9.9K29 Feb
357
355
337
329
319
2K
472
5830 Dec
43115 Jan
6717 Mar
1784 Jun
753
Last 13 collected posts, oldest on the left. The scale is logarithmic: one post can outrun the rest a hundred times over.
Engagement rate per post
1.08%29 Feb
2.52%
1.41%
1.48%
3.04%
1.88%
0.74%
1.91%
3.45%30 Dec
0.46%15 Jan
1.64%7 Mar
2.25%4 Jun
1.06%
Reactions — likes, reposts, replies and quotes — divided by views.
What the audience does
Likes70.9%146 in total
Reposts13.6%28 in total
Replies7.3%15 in total
Quotes1.5%3 in total
Bookmarks6.8%14 in total
Share of every reaction we collected for this account. Replies mean argument, reposts mean endorsement, bookmarks mean the post was worth keeping.
The follower curve appears once this account has two daily snapshots — we take one a day, and this one is on its first.
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