Many states have passed laws requiring universal lead screening — but not Nebraska.
So in Omaha, where factories deposited 400 million pounds of the toxic metal, most kids haven’t been tested.
Wouter Schievink is the EDS experienced West Coast neurosurgeon, if memory serves Dr Chu there has also been trained by Dr Paolo Bolognese (of the EDS Chiari Center), you could ask for a remote opinion if you live in the LA area but otherwise would have to travel
Mast cell disorders impact immune function, blood and clotting, connective tissue, muscle issues. A mast cell specialist, EDS geneticist, EDS/MECFS neurosurgeon, dysautonomia specialist and MECFS specialist are all key to what you specifically should or shouldn’t do and why. Everyone is different.
She is not a PCP, she is a biogeneticist. Your question depends on each patient case and would likely be something you’d want feedback from a neurosurgeon, neuroradiologist, neuro PT, PT, PCP. MECFS specialist, MCAS doctor and/or others. Many things impact connective tissue.
Air pollution could be linked with increased #migraine activity, study finds
Please donate to Emily's medical care fund. If you can't please share. #disabilty
In the hospital for an extra day having a very hard time, if anyone could please share my neurosurgery fundraiser even if you can’t donate so more people see it, appreciate you, thank you
Doctors found more issues, I will update when I know more www.gofundme.com/f/help-emily...
As someone DX’d with #HSD, but not #hEDS, with a TON of systemic issues throughout my body, this the best news. A grain of hope for improved care.
Absolutely correct. The other side has vast resources & can do lots of things, some legal, some shady, some gross. What a journalist has to do has to be note-perfect & stand up in court. And every time I went down this road, I knew I could lose not just my career but my house, savings. Everything.
Take a look at the CNN sourcing and fact-checking on their Swalwell article. Look at how many extra people they contacted in order to corroborate claims. They viewed screenshots, called parents/husbands/friends/colleagues. They viewed TV footage and interviews, & more. Two things worth pointing out:
This thread. I have been doing this kind of work for a very long time and I know a lot about exactly this. If you want to do misconduct reporting with scared sources going up against very powerful people, and also keep your soul, it takes time. So much time. It’s very difficult. Brain meltingly so.
Neurologists tend to be among the worst at this
Get a PCP referral to Fran Kendall, she does telehealth and could figure you out
For lazy clinicians: Lara Bloom announces at 6:56:00 the #EDS diagnostic criteria update will go out in journals December 2026-March 2027
The first change hundreds of EDS experts proved and the Ehlers Danlos Society will implement is that #HSD is #hEDS
m.youtube.com/watch?v=NYfe...
*meant
Fran Kendall explained point 2 to me in 2019, it is in line with Clair Francomano’s work
It’s entirely possible some of the hEDS/“HSD” which is also hEDS patients have biomarkers associated either with hEDS or other types of EDS, but those biomarkers aren’t fully discovered yet
Clinicians reading this thread:
1) biomarkers HAVE been discovered for hEDS, they don’t represent the whole population (as with many conditions’ biomarkers), and aren’t mean for genetic screening
2) dark genetics means unknown biomarkers may be associated with all types
Florida Mayo Clinic clocks #hEDS as 255 million people, or 1 in 32 people
That’s way more common than the 2019 UK hEDS/HSD study finding 1 in 500
I think clinicians will be shocked by exactly how big of a bomb Covid/Long Covid are in unveiling EDS diagnoses, now and in future
Also for what it’s worth EDS experts have clocked chronic immune dysfunction and EDS patients
This should surprise no one, mast cell disorders come with EDS, mast cells are immune cells, mast cell disorders are immune cell disorders
Again, common sense medicine here
I have personally witnessed this happen repeatedly working in journalism and communications for two decades
I have personally witnessed social media groups of hundreds of thousands to millions of clinicians bashing patients and strategizing care denial based in diagnostic discrimination
I hope people realize clinicians being awful to patients and spreading diagnostic misinfo online goes further
They write for media outlets crafting lack of public knowledge and support
They cause severe disability and death, strategizing online how to deny care where they work
People hear "judge" and they assume judicial independence. But the Trump administration has hacked away at immigration judges independence to the point that they can expect to be fired if they don't do the Trump administration's bidding. And the Supreme Court has blessed this loss of autonomy.
Yep Lara Bloom spoke at the conference, links in my thread
Day 1 conference recording: m.youtube.com/watch?v=NYfe...
Day 2 conference recording: m.youtube.com/watch?v=IGtr...
Thank you to all #EDS clinicians who participated in the #EDSSymposium by @uvaresearch.bsky.social — you’re giving so much hope to patients, and more clinicians need to listen to you
I have been in horrific 10/10 pain, cyclical vomiting, loss of motor skills, loss of speech and vision and hearing most of the week due to Chiari malformation symptoms
It took me 5 minutes to get up to speed about what happened at the conference
Clinicians, please do better
The first day of last week’s conference, The Big Takeaway was #hEDS and #HSD are the same
It seems super suspect that it’s “just a coincidence” that immediately following that is when clinicians on #MedTwitter #MedSky once again started to spread misinfo opinions about #EDS
Many of these clinicians are just arrogant, they spread misinformation about EDS solely based on their uneducated opinions, while never checking with the expert say, even at the exact same times the experts are proving the opposite of their opinions
#MedTwitter #MedSky clinicians who aren’t experts in Ehlers Danlos fight with #EDS patients… who get our info from EDS experts
These clinicians don’t attend EDS expert conferences/panels (or watch recordings), don’t read free research by experts — they fight with the patients
Stop it
There was an Ehlers Danlos conference last week, top #EDS researchers discussed how hypermobile Ehlers Danlos and hypermobility spectrum disorder are the same
The proof is in, the EDS Society will announce by end of 2026
But #MedTwitter #MedSky still fights with patients about this
Here’s the story of one of them. Awful www.thestranger.com/forced-out/f...
The symptoms of a stroke or brain bleed are the same symptoms of having your brain and brainstem smashed with blood and cerebrospinal fluid choked off (which is how many of us get strokes and brain bleeds) so