Share this page!

Cortney Gensemer, PhD 🔬🧬 Profile picture
Twitter logo
Aug 30 • 4 tweets • 2 min read
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.
How do we fix education? Require students to learn it. Put connective tissue disease / EDS questions on professional exams for nurses, physical therapists, physicians, etc. If people *have* to know it, schools and programs will be forced to teach it.
BUT it needs to be taught correctly. With accurate prevalence and demographic data, true examples of patient phenotypes, info on cormorbidities etc.

We need change.

#EhlersDanlosSyndrome #neisvoid #medicine

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Cortney Gensemer, PhD 🔬🧬

Cortney Gensemer, PhD 🔬🧬 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @CortDoesScience

Cortney Gensemer, PhD 🔬🧬 Profile picture
Aug 29
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
- genetics often stops with clinical geneticists and doesn’t reach a lab that can follow up with biology

- a lack of continuity of care so patients see multiple specialists that don’t always know the whole picture outside of their speciality, which is then missing from research
Read 6 tweets
Cortney Gensemer, PhD 🔬🧬 Profile picture
Feb 1
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.
The “despite disability” language can be super toxic. I’ve heard myself described as that - someone “overcoming” a difficult diagnosis and doing the “impossible”. But I’m not overcoming anything.
Read 9 tweets
Cortney Gensemer, PhD 🔬🧬 Profile picture
Feb 8, 2021
Just a reminder that #ehlersdanlos is just another reason to stay away too
Too many people with ehlers danlos and joint hypermobility see chiropractors without realizing the dangers in it
Contraindications to spinal manipulative therapy according to @WHO
- basilar invagination of the upper cervical spine
- chiari malformation
- congenital, generalized Hypermobility
- signs or patterns of instability
- syringomyelia
Read 7 tweets
Cortney Gensemer, PhD 🔬🧬 Profile picture
Feb 4, 2021
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)
Eligibility and info can be found here or through the application link (3/3) ImageImage
Read 7 tweets
Cortney Gensemer, PhD 🔬🧬 Profile picture
Jan 20, 2021
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”)
Joint pain was seen in 100% of patients. When will more doctors start taking EDS seriously as a chronic pain condition?
Read 5 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

:(