EDS Northwest

@edsnw — Congrats, you've been nominated for Patient Leader Hero award! Check your email to claim your #WEGOHealthAwards nomination.

Sarah Tompkins, and. Wheelchair Pacific Coast USA, shares about living with #eds on our Facebook page! #MWUSA #MWPCUSA #disabilitypageant #disabilitytwitter

Be kind, always. You never know someone's story just by looking at them. ⁠ ⁠ #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #ChronicIllness

Vanderbilt researchers report a new genetic disorder that causes familial autonomic ganglionopathy. We look forward to more genetic research in autonomic disorders, a relatively untapped area of research. Abstract here: n.neurology.org/content/earl…

Also, there are wonderful #raredisease advocates in WA with whom you could connect including Carolina Sommer of @BORNAHERO1, Sarah Tompkins of @EDSNW & Sandra Sermone of @ADNPkids. Participating in #RareAcrossAmerica provides the opportunity to meet other advocates from WA.

COVID-19 and impact on those with disabilities, and the challenges facing rural communities: "Not enough consideration was given to disabled people and their complex needs when lockdown came into effect." bbc.co.uk/news/uk-scotland-h…

We’re thrilled to share .@GovMikeDeWine has signed HB412, legislation creating a Rare Disease Advisory Council (RDAC) in Ohio, into law! The RDAC will allow #raredisease advocates to educate lawmakers about the needs of #OH residents with rare diseases.

I don’t know who needs to hear this today but ‘able bodied’ isn’t the opposite of disabled.

if we're gonna talk about self-diagnosis being dangerous (as if you can just self-prescribe medications or something after 🙄) then why can't we address how dangerous misdiagnosis is, how dangerous physicians that refuse to listen are, and how many people they kill that way?

‘We’ve built and maintained an ableist system’ – Science continues to throw up barriers for disabled researchers chemistryworld.com/opinion/d…

New article on #DoctorsAreDickheads published in the “Journal of Medical Internet Research.” @jeff_says_that gets a shout out! jmir.org/2020/10/e17595/ *I love my doctors and support everyone on the COVID frontline. I also support all those whom medicine chews up and spits out.

VIRTUAL EVENTS 2021 - Pediatric Concerns in EDS and HSD: Exploring the impact of misdiagnosis, January 10, 2021 Exploring the affect of a child’s misdiagnosis: delays in care, mistreatment, allegations of child abuse, & impact on physical & mental health buff.ly/35FEWqq

“Coat hanger pain” is common in those with dysautonomia and is believed to be caused by poor blood flow to the muscles of the upper back and neck.

Last week, NORD premiered the #RareImpact Awards during a virtual watch party. Were you unable to make it? Watch the awards show here: bit.ly/356aR2U

NORD and our #raredisease factsheet are featured in a @PsychToday article examining a new article that details how "People with Rare Diseases Need Better Social Support." Read more: bit.ly/2SWBxh1

I’m honored 2 b amongst my fellow #WEGOHealthAwards finalists @ #HLTHVRTL. 💙Celebrate those elevating patient voices Thur. 10/15 @ 7pm ET @EDSNW #EDSHSD #PatientAdvocacy #WEGOHealthAwards #HLTHVRTL2020 #DysautonomiaAwarenessMonth🦓 Add an event reminder: bit.ly/34Ez5RH

New #webinar: "Take the Leap! Forming a 501(c)(3) and Establishing a Disease Registry to Advance Your Rare Community" on Thursday, October 22 at 4:00PM EDT. Join us for this free webinar to learn more about NORD’s #RareLaunch Program. Register: bit.ly/3ng5FlA

"Orthopaedic management of the Ehlers–Danlos syndromes" onlinelibrary.wiley.com/doi/… “Orthopedic Issues in the EDS Hand, Wrist and Arm” m.youtube.com/watch?v=5oYcTb… 4/