EDS Wellness

04/02/2025

For most of her life, Jacqueline Luciano, a nurse in Chicago, has experienced mysterious injuries and ailments, including a long list of sprains and tears, dizziness and fatigue, and chronic headaches and pain.

As Luciano would discover, many of her health issues could be traced back to the fact that she is hypermobile, or double-jointed. She joins an increasingly visible group of people, including the singer-songwriter Billie Eilish and author Rebecca Yarros, who are speaking out about their struggles with hypermobility.

Learn more about hypermobility and what the research says about its surprising health risks: https://on.natgeo.com/4j9Wwad

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

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.

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...

08/06/2022

https://www.tiktok.com//video/7125579595494985006

Replying to Before you speak, take a seat 👩🏻‍🦽❤️ Bays

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?⁠
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What tests or imaging are recommended to evaluate pain or unstable joints?⁠
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What is the difference between dislocations and subluxations? ⁠
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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). ⁠
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In this conversation with professionals episode, Dr. Raggio and Dr. Simmonds also discuss:⁠
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Are the different types of EDS and HSD more prone to fractures?⁠
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How best can physical therapy help with these orthopedic problems?⁠
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Are EDS and HSD degenerative conditions?⁠
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What orthopedic procedures or surgeries are recommended for unstable joints and are there any procedures or surgeries that should be avoided?⁠
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What surgeries do you recommend for connective tissues, ligaments, tendons, and tears?⁠
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What is the right amount of movement for somebody with EDS or HSD?⁠
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Are PRP, prolotherapy, stem cell, and steroid injections safe for joint pain?⁠
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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?⁠
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Watch now on YouTube - https://youtu.be/8dAc_CgYCJU

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"

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