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Jennifer Brea🦒 Profile picture
@jenbrea
Aug 25, 2019 • 5 tweets • 3 min read • Read on X
I think the new disabled people’s hashtag vis-a-vis the medical system, and especially re: disbelief and misdiagnosis of women/POC/LGBTQ should be #noncompliant
Because it’s only by being #noncompliant that so many of us were able to find accurate diagnosis, avoid “care” that might cause us harm, and find treatment that actually fit the bill.
Because it’s in the moments that, in the face of great pressure (and often against my better judgment), I did comply with the standard of care, I ended up in the three worst medical crises of my life #noncompliant
It’s because even Dr. Laura Boylan *recovered* following brain surgery, this article doubts her, the doctors doubt her, and she is called “blunt and confrontational” for fighting for her own survival propublica.org/article/in-men… #noncompliant
Because I really want to team up with @dianeoleary to launch this campaign, but it is going to be a gargantuan lift, and right now I probably have a spinal fluid leak, so I did the next best thing, and started a hashtag #noncompliant

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More from @jenbrea

Jennifer Brea🦒 Profile picture
Dec 31, 2023
I’ve been getting more and more into skincare, and what’s so interesting about it is the overlap between the most popular topical treatments and what people with connective tissue disorders are trying (experimentally) to try to ameliorate major disorders. #MEspine
In the skincare world, some of the most popular treatments include ingredients like hyaluronic acid, Vitamin C, and GHK-cu (copper peptides), all of which #hEDS and #MEspine people are already taking in an effort to reduce joint pain or improve ligament strength.
What I haven’t seen much talk of in #hEDS/#MEspine land are microneedling, LED therapy (red and far infrared light), and retinols (especially tretinoin), which, from what I’ve seen, are probably among the most effective skincare interventions.
Read 10 tweets
Jennifer Brea🦒 Profile picture
Aug 12, 2023
For #LongCovid folks taking Nattokinase, in addition to breaking down fibrin (potentially helpful for microclots) it apparently it hydrolyzes collagen fiber, which may not be good if you have a connective tissue disorder and could explain some adverse reactions.
There’s not a lot written about Natto and collagen (as compared to its effects on fibrin) but here is one reference. “Posterior Vitreous Detachment Induced by Nattokinase”
▶️ iovs.arvojournals.org/article.aspx?a…
@CovidCastaways And I think it’s possible this could happen if one is taking it over a period of time.
Read 14 tweets
Jennifer Brea🦒 Profile picture
Jul 31, 2023
Just sharing @edyong209's excellent article on post-exertional malaise (PEM), a hallmark feature of ME and ubiquitous among #longCOVID patients. MD's, we can also experience fatigue but these are completely different things. My take? PEM is a neurological symptom...
The patients experience when their nervous system is required to produce energy under conditions of hypoxia (low oxygen), which is caused by hypoperfusion of the brain and/or spinal cord. There is a wide literature on metabolism under conditions of hypoxia...
In both animals and humans. We see things like elevated lactate and inflammation, both of which have been documented in ME patients in numerous studies. (So has hypoperfusion of the brain, for that matter!)
Read 9 tweets
Jennifer Brea🦒 Profile picture
Jul 30, 2022
I went to a new sports medicine place. (Since Miami, I’ve started subluxating ribs again, which I haven’t done in > 1 year.) However, the chiro I saw there thinks my issues actually originate in my brainstem and cerebellum…
…which is interesting as these were likely the two brain structures most affected by my CCI/AAI and tethered cord.
He did one of the most thorough neuro exams I’ve ever had and found a bunch of movements (ones you would not do in day-to-day life) that were simply too complex for my brain to coordinate.
Read 10 tweets
Jennifer Brea🦒 Profile picture
Dec 20, 2021
@mattyglesias So, a few things. One “ensure that no one gets it” can’t be the bar. It should be transmission prevention and risk mitigation to the fullest extent possible. (By possible I also mean plausible, but people often hide behind “plausible” as a way to defend doing Jack shit.)
@mattyglesias There are many transmission reduction strategies that we could be employing but aren’t. (Read up and down the thread. These are the people who were full blast organizing a global masking campaign back when the CDC and most MDs thought that was a silly idea.)
@mattyglesias In fact, we aren’t even talking about transmission reduction anymore! Most of the focus is severe disease prevention, because that is what vaccines do. The intervention has shaped the goal. If vaccines did something different, then that would be the goal.
Read 9 tweets
Jennifer Brea🦒 Profile picture
Dec 18, 2021
This is important. I’ve had disabled people with fairly “mild” medical conditions (in terms of daily physical anguish) push back when I have tried to talk about disease severity with the critique that I was engaging in some kind of oppression Olympics. Or hierarchy of disability.
Not all disabled people have medical conditions but many of us do, and for some communities, that IS the lion’s share of the fight. When you’re not getting your basic medical needs met, and are being actively harmed, you have to share the facts that mitigate that harm.
Granted, baby disableds can sometimes do this in a way that uses ableist tropes, etc., but we need both a “hall pass” as well as ways to gradually learn. In the gaps, I think there are bridging concepts and language we are missing.
Read 8 tweets

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