Alissa🕸hEDS manager retweeted
Awww. @badelastic that’s so sweet!! I’m thrilled and grateful that #Costco included this story in their popular magazine, Costco Connection! The more people knowledgeable about these conditions, the better! 🧬🎧🦓
#BendyBodiesPodcast #podcast #EhlersDanlos
I think it’s very cute to have my parents tell me to read this Costco article about #EDS & see they’ve underlined @BluesteinLinda. They don’t know I already know who that is.
Alissa🕸hEDS manager retweeted
For that reason, seeing specialized SRS providers is highly recommended and can save you time and unnecessary tests and procedures. Currently, there are only limited specialists and surgeons who can diagnose and treat SRS. You can find them at slippingribsyndrome.info/fin…
Alissa🕸hEDS manager retweeted
I want to do a brief thread covering this topic and the new study coming out with info that has been known for awhile. The new part is the new diagnosis that is coming from this. #HSD #FDHS
Alissa🕸hEDS manager retweeted
This is a somewhat dangerous, over simplified reduction.
This would mean up to 40% of gen pop has #hEDS and even I don't think so. 40% may have GJH (be bendy).
And, supplementing methylfolate is not entirely benign, depending on downstream methylation cycle SNPS. Beware.
Researchers at @Tulane University have found a genetic variant that causes hypermobile Ehlers-Danlos syndrome (#EDS). The discovery points to a possible treatment that's already available. #cpp #chronicpain @EDSawareness1 @TheEDSociety bit.ly/3nZJbKa
Alissa🕸hEDS manager retweeted
It’s so cruel it’s comical that patients like those of us with #EDS who have issues that kill our energy(& every last bit being used to just keep my head up etc!) are burdened with epic odysseys to find someone who is willing to acknowledge us & then get ourselves there. BULLCRAP
This quoted post is unavailable.
Alissa🕸hEDS manager retweeted
2. If you have #hEDS or suspect that you do, I know there can be a variety of reasons for this, but are you having to pee super frequently, like liquid goes right thru you? Or nah—seems like a standard frequency. #EDS
(thank u for answering!!! helpful!)
73%always be peeing
27%nah, I’m ok
44 votes • Final results Alissa🕸hEDS manager retweeted
If you have #hEDS or suspect that you do, I have a couple of questions about liquids.
1. I know things could be more complicated but in general, do you feel like you’re super thirsty all of the time, can’t seem to get enough liquid, or nah, you’re ok #EDS
73%super thirsty
27%nah, I’m ok
59 votes • Final results Alissa🕸hEDS manager retweeted
Thank you. What a response to my last tweet on IBS & hypermobility. So many of us misdiagnosed, ignored, waiting decades for any connection to be made. That’s a research topic right there. Plus we now know the link between MCAS & IBS. That’s a whole other question to look at.
Alissa🕸hEDS manager retweeted
When you consistently lock the knee joint, the knee starts acting like the foot. We no longer notice our feet. Our feet ideally need to be connected heavily into the ground to feed up the info that we are stable. If they don’t, we’re going to steal stability from anywhere else 😬
Alissa🕸hEDS manager retweeted
Putting out this little PSA:
If anyone need anything regarding EDS, POTS, or MCAS, please don’t hesitate to reach out!
I’m happy to jump on a call too (for free, of course)!
(I’m so over people charging wild money for this and spreading misinformation 🙄)
#NEISVoid
Alissa🕸hEDS manager retweeted
This applies to the whole body. All muscles. They need balance & variety. They need to respond to loads and be able to relax & lengthen too. Using all 3 elements will help. #hypermobility
Alissa🕸hEDS manager retweeted
"Everything is normal again!" the ableds say as they complain about gas prices, inflation, cost of living, supply chain crises, workforce shortages, canceled flights & that cough they can't shake
Alissa🕸hEDS manager retweeted
One of my patients, a cardiologist with #POTS, said that they used to dismiss young women with tachycardia as anxiety until they themselves developed POTS and realized that it had nothing to do with anxiety and everything to do with disabling physical symptoms.
Alissa🕸hEDS manager retweeted
Because I live in our world of EDS community, I sometimes forget it’s still not well known in healthcare. Just been for a consultant appointment, casually mentioned I had EDS. Got a blank look. Said Ehlers-Danlos Syndrome. Blank look. But she did ask what it was.
Alissa🕸hEDS manager retweeted
💯!! Why do so many colleagues still think #PosturalTachycardia is rare? We must continue to spread awareness. #POTS is not caused by deconditioning, anxiety, obesity, or mental illness. Accurate diagnosis is essential for proper treatment. #MedTwitter
This medical student with #POTS was told by a #cardiologist to lose weight to treat postural #tachycardia. She lost 40 lbs, but her POTS only got worse, and while obesity IS a disease, it should not become the new "anxiety" to explain away physiologic syndromes. 🙄 #MedTwitter
Alissa🕸hEDS manager retweeted
Movement with #EhlersDanlos syndromes is tricky but well worth the effort.
@jdibon’s @YouTube videos, @instagram posts, podcast, and Zebra Club are incredible resources that I recommend to my patients routinely. 🦓
Thanks @drpaulwinston for the kind mention. 🙏🏻
Alissa🕸hEDS manager retweeted
ADHD'ers experience emotions differently than non-ADHD'ers.
Emotional behaviours can happen faster due to ADHD impulsivity. Emotions can feel like they're gonna last forever due to our differences in memory. Or they can feel paralyzing due to struggles identifying the next steps
Alissa🕸hEDS manager retweeted
This video on how to manage painful Hypermobile thumbs with some movement seems to be popular on my YouTube channel. Recent comment below. I have very mobile thumbs so shared what I find best.
youtu.be/CmBgGG7YV-Y
