EDS Wellness

EDS Wellness 501(c)(3) NonProfit Corp focused on Health Education • Conferences • EDS Advocacy & Coaching • Educat [email protected]

501(c)(3) NonProfit focused on Health Education • digital/print media & resources • Webinars • Podcasts • Conferences • EDS Advocacy & Coaching

Movement • Nutrition • Wellness

Publishing of print and digital educational resources & materials for those living with Ehlers-Danlos syndrome & other chronic, often invisible illnesses. Co-creator & event planner for Wellapalooza Integrative Health &

Wellness Conferences

- the coolest integrative health conferences ever! www.wellapalooza.com

Moving Naturally with Hypermobility seminars - www.movingnaturallywithhypermobility.com

Owner of Invisible Strength anthology series (previously Our Stories of Strength) - sharing good news stories of strength, perseverance, and hope, from those living with chronic, often invisible illnesses.

Co-Author of Our Stories of Strength - Living with Ehlers-Danlos Syndrome - debut anthology in the Our Stories of Strength anthology series. www.invisiblestrength.co

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Questions?

01/17/2025

Are you double jointed? Your go-to party trick might amuse and entertain, but it could be a lot worse for your health than we thought.

People who are hypermobile, the proper name for being double-jointed, are able to extend their joints past the normal range of motion. It presents differently for different people, but it’s often a sign that your joints’ connective tissue is weak—leaving one vulnerable to wide range of issues such as chronic pain, gastrointestinal disorders, and even long COVID or POTS.

Learn more about the health risks presented by hypermobility at: https://on.natgeo.com/4agPEEQ

https://apple.news/Ar6FCN48TTEaRvIeCx3B3Sg
02/07/2024

https://apple.news/Ar6FCN48TTEaRvIeCx3B3Sg

Chronic pain. Extra-flexible joints. Stretchy skin. These are just some of the symptoms of the debilitating genetic disorder that’s incredibly hard to diagnose.

We are looking forward to tonight! Please join us if you are able! Recordings will be available here on Facebook, the Ma...
10/30/2022

We are looking forward to tonight! Please join us if you are able!

Recordings will be available here on Facebook, the Mast Cell Research page and also on Hell's Bells and Mast Cells.

Links are open to register via zoom or join us here live tonight at 7pm EST!

https://us02web.zoom.us/webinar/register/WN_bZ1nJuHvQLKsZ_pbCNVsRA?fbclid=IwAR0L3JIqCW65AGXLVMYo4Jx1OlugXRNzVQkNJTP0tUKA7g5xGh_umns32tk

RP Mast Cell Research

Hell's Bells and Mast Cells KNMyles: Health Educator/Movement Instructor/Writer/Speaker/Advocate

Dr. Lawrence Afrin & Kendra Neilsen Myles of Mast Cell Research are hosting a live Q&A in honor of the Annual Mast Cell Disease Awareness Day on October 20th with special guest Keeya Steel of Hells Bells and Mast Cells. This live community broadcast & Q&A will be streamed on the Mast Cell Research F...

08/27/2022

By Madora Pennington, PNN Columnist Even though he was just a kid, people called Mitch Martow lazy. Too exhausted to maintain friendships and falling asleep in school, his classmates thought he was strange. Specialists couldn’t find a medical reason for his complaints, and psychiatrists had no ans...

05/30/2022

The Core stability fadEvery decade has its fads, with some coming and some going. Unfortunately, though, hypermobility core exercises seem to have maintained...

05/22/2022

What orthopedic problems do we see in the different types of EDS and HSD?⁠

What tests or imaging are recommended to evaluate pain or unstable joints?⁠

What is the difference between dislocations and subluxations? ⁠

Pediatric orthopedic surgeon, Dr. Cathy Raggio in the USA, and physical therapist, Dr. Jane Simmonds, join us to answer your most frequently asked questions about orthopedic concerns in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). ⁠

In this conversation with professionals episode, Dr. Raggio and Dr. Simmonds also discuss:⁠

Are the different types of EDS and HSD more prone to fractures?⁠

How best can physical therapy help with these orthopedic problems?⁠

Are EDS and HSD degenerative conditions?⁠

What orthopedic procedures or surgeries are recommended for unstable joints and are there any procedures or surgeries that should be avoided?⁠

What surgeries do you recommend for connective tissues, ligaments, tendons, and tears?⁠

What is the right amount of movement for somebody with EDS or HSD?⁠

Are PRP, prolotherapy, stem cell, and steroid injections safe for joint pain?⁠

How do you know when to deal with a dislocation or subluxation at home or if you need to go to either an emergency room or an orthopedic doctor?⁠

Watch now on YouTube - https://youtu.be/8dAc_CgYCJU

Congratulations Karina Sturm - Writer, Author, Professional Patient
05/22/2022

Congratulations Karina Sturm - Writer, Author, Professional Patient

Guess who presented their new book at the annual meeting of the board of the German Ehlers-Danlos organization? I am getting more used to public speaking and to being an officially published book author (soon). :) The link to our book is in my bio (it’s a German EDS book)

05/21/2022

Why do people with EDS have such a hard time falling asleep?

Check out ehlers-danlos.com for more information.

Please share our daily facts with your networks for Ehlers-Danlos Awareness!



"Sleep is one of our biggest issues. From tossing and turning because of pain, to having adrenaline rushes all night, sometimes even the strongest sleep medicines don’t knock us out. You’ll always know whom to message at 3 am.

Dr. Alan Pocinki noticed we get knocked out of sleep cycles by our racing hearts. Sometimes beta blockers and other adrenaline lowering meds can really help! Here is his talk on sleep issues and EDS: https://vimeo.com/101947622"

“Obviously, my health has changed a lot since I got pregnant and gave birth. I started getting really, really, really si...
05/11/2022

“Obviously, my health has changed a lot since I got pregnant and gave birth. I started getting really, really, really sick, and I’ve been kind of sick pretty much most of my adult life, but it started getting really bad. I was hospitalized for anaphylaxis a few times and I had tons of other stuff going on. Basically, after seeing, like, a hundred thousand doctors, I got diagnosed with Ehlers-Danlos syndrome, Sjögren’s syndrome, mast cell activation syndrome, POTS, and I’m still looking for answers to the root cause of some of these things. It could potentially be another type of autoimmune disease, and I’ve known I’ve had autoimmune issues for most of my life, especially having endometriosis, but it kind of has been exacerbated since I had Ender.”

’I started getting really, really, really sick, and I’ve been kind of sick most of my adult life, but it started getting really bad.’

04/16/2022

The Fibro Guy

RP Karina Sturm - Writer, Author, Professional Patient
04/08/2022

RP Karina Sturm - Writer, Author, Professional Patient

New Research!

Diseased filum terminale as a cause of tethered cord syndrome in Ehlers-Danlos syndrome: histopathology, biomechanics, clinical presentation, and outcome of filum excision.

Jon Rodis shared this important new study by EDS & TC expert Dr. Klinge with us. "Both, morphological findings, and biomechanics tests indicate limited elastic properties of the FT in hEDS, which is no more able to dampen but still transmitting spine movement related stretch forces.”

The study is open access and free to read for everyone.

Source: Klinge, P.M., Srivastava, V., McElroy, A., Leary, O.P., Ahmed, Z., Donahue, J.E., Brinker, T., De Vloo, P. and Gokaslan, Z.L., 2022. Diseased filum terminale as a cause of tethered cord syndrome in Ehlers Danlos syndrome: histopathology, biomechanics, clinical presentation, and outcome of filum excision. World Neurosurgery.

https://www.sciencedirect.com/science/article/pii/S1878875022003291?fbclid=IwAR1_qHjyN2y5d51Taf3yWYSkr5Wm9RQzT0yYa7O9ftfsHZjGleDaVfygkJ0

RP Karina Sturm - Writer, Author, Professional Patient
04/06/2022

RP Karina Sturm - Writer, Author, Professional Patient

New Research!

Craniocervical Instability in Ehlers-Danlos Syndrome—A Systematic Review of Diagnostic and Surgical Treatment Criteria

"There is a lack of high quality, prospective evidence regarding the evaluation of suspected CCI in patients with EDS. Based on our systemic review, we recommend that the CXA, Harris measurement, Grabb-Mapstone-Oakes measurement, and the angular displacement of C1 to C2 be used to evaluate suspected CCI in EDS patients.”

This article is open access and free to read for everyone.

Source: Lohkamp, L.N., Marathe, N. and Fehlings, M.G., 2022. Craniocervical Instability in Ehlers-Danlos Syndrome—A Systematic Review of Diagnostic and Surgical Treatment Criteria. Global Spine Journal, p.21925682211068520.

https://journals.sagepub.com/doi/10.1177/21925682211068520?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

RP EDS Awareness & Body Support Store & Karina Sturm - Writer, Author, Professional Patient
03/31/2022

RP EDS Awareness & Body Support Store & Karina Sturm - Writer, Author, Professional Patient

Our monthly Funny Bone Newsletter is out! And this month, we are proud to present to you two exclusive interviews: one with fellow zebra and journalist Meghan O’Rourke, who recently published the book The Invisible Kingdom sharing her experience of living with several chronic illnesses, and another interview with Dr. Linda Bluestein, who, together with Keeya Steele (Hell’s Bells and Mast Cells) created an educational resource to help people with EDS prepare for medical appointments. Also, don’t forget to check out the Stronger Together piece by Eve, an aging athlete with EDS, the two new studies on CCI and TC, updates about the Norris Lab, and all the other resources we put together for you!

https://archive.aweber.com/newsletter/edsawareness/MTM3NDE2ODg=/april-ehlers-danlos-news-updates.htm

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501(c)(3) NonProfit focused on Health Education • digital/print media & resources • Webinars • Podcasts • Conferences • EDS Advocacy & Coaching Movement • Nutrition • Wellness Publishing of print and digital educational resources & materials for those living with Ehlers-Danlos syndrome & other chronic, often invisible illnesses. Co-creator & event planner for Wellapalooza Integrative Health & Wellness Conferences - the coolest integrative health conferences ever! www.wellapalooza.com Moving Naturally with Hypermobility seminars - www.movingnaturallywithhypermobility.com Owner of Invisible Strength anthology series (previously Our Stories of Strength) - sharing good news stories of strength, perseverance, and hope, from those living with chronic, often invisible illnesses. #Stronger2Gether Co-Author of Our Stories of Strength - Living with Ehlers-Danlos Syndrome - debut anthology in the Our Stories of Strength anthology series. www.invisiblestrength.co Social EDS Wellness: Twitter: @EDSWellnessSol Instagram: @EDSWellness Tumblr: @EDSWellness Pinterest: @EDSWellness Questions? [email protected]