Why is the chronic illness community infiltrated with so much pseudoscience? Let's talk about the cycle of medical neglect, stigma, healthcare shortcomings, and predatory pseudoscience practices - 🧵 Here's a visual that might help:

The Ehlers Danlos Syndromes (EDS) are inherited connective tissue diseases. Connective tissue is like the glue that holds your body together. If you mess it up, a lot of things can go wrong.

A brief summary of my postdoc research (🧵) for #NPAW2022

#MUSCCGS #CGSPostDoc (1) For most types of EDS, we understand the cause. But for hypermobile EDS (hEDS) researchers are still unsure of why people have it, and why some people are so severely affected by it. Since we don't understand the causes or mechanisms, there are no direct therapies or cures. (2)

When we start to improve the education in the medical field on EDS and awareness in the general population it will have to naturally lead to more funding and research because people will know what it is, more will be accurately diagnosed & more people want to study it 🧵 Start at the bottom, start educating undergrads in biology and human A&P classes, start educating healthcare professionals and it will improve SO many aspects of the disease from diagnosis to research and treatments.

What do you think is the biggest disconnect between the clinic and research when it comes to hEDS? Here are my thoughts:
- many things are “known EDS things” that EDS providers see. But this data often isn’t published or easily accessible by researchers so there is no follow up on why and how those things happen

Just because I’ve managed to do a PhD with EDS doesn’t mean other patients aren’t trying hard enough if they struggle to do “less”. It often means other patients don’t have the same privileges I’ve had… That can mean that the severity of the illness differs, that they don’t have accommodations they need, don’t have access to expert medical care, don’t have a supportive school or research environment, are missing support from others in their life, etc.

Just a reminder that #ehlersdanlos is just another reason to stay away too

https://twitter.com/TheDudeDO/status/1358495123777150976

Too many people with ehlers danlos and joint hypermobility see chiropractors without realizing the dangers in it

The Norris lab is hosting a hypermobile Ehlers Danlos Syndrome (hEDS) summer research internship program on the campus of the Medical University of South Carolina (MUSC).Those who are interested should look at the attached photos for eligibility requirements and description (1/3) To apply, fill out an on-line application via: redcap.link/hEDSInternProg…

We hope those who are eligible consider applying. We need more research on hEDS and hope you will join us in our plight to discover causes of hEDS!

(2/3)

Systemic manifestations of Ehlers Danlos Syndrome - ncbi.nlm.nih.gov/pmc/articles/P…

Another paper confirming what we already know: systemic manifestations including autonomic dysfunction, mast cells activation syndrome, migraine and GI symptoms are fairly common in EDS patients❗️ (TMJ is also mentioned as “extra musculoskeletal manifestation”)