ehlers danlos syndrome

The sacroiliac joint is one of the most common problem areas for people with Ehlers-Danlos or even anyone with hypermobility but it’s also one of the most misunderstood and misdiagnosed areas.

I have been working with Shant from Strength Revolution (@strength.revolution on instagram) for the past 3 years to manage the SIJ pain caused by my Ehlers-Danlos/hypermobility.

Shant’s protocols have helped me come out on top of bodybuilding competition prep, powerlifting competition prep, and training through many flare ups - and this is exactly what we are discussing in this podcast taken from a recent Instagram Live we did together.

Over the years I’ve also sent him plenty of EDS clients and I’m stoked with the results I’ve seen them get.

In this live we discuss: 

• Why the SIJ is such a problem for people with hypermobility
• Why it’s such a poorly understood & misdiagnosed area
• How hypermobile people need a different/ongoing approach to rehab
• Common symptoms of SIJ dysfunction
• Suggested approaches for SIJ rehab in hypermobile individuals

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**Disclaimer: the information in this podcast is not medical advice and is for entertainment purposes only. Consult a good doctor before engaging in any new exercise.**

Your Host - Annie Short: Strength Coach, Exercise Scientist, Powerlifter, Bodybuilder, and Ehlers-Danlos'er
Guest - Shant Rahman: Rehab Genius, Exercise Scientist, Strength Coach, and Athlete

Don't forget to follow me on Instagram for more EDS + training content - @annieshortstrength

In this episode of Freedom Talks, Host, Joe Ogden, talks with Erin Bafunno, assistant manager at the Fox Point clinic. Erin has known she was going to be a Physical Therapist since 7th grade and talks with Joe about how she became interested in the profession. They also discuss how teaching at the Marquette University DPT program has kept her knowledge and skills sharp. A specialty that not many other therapists have been taught is craniosacral therapy. She uses this therapy to help her patients whose autonomic nervous system is always turned up to high.

In this episode we speak with Ariana Scalfo, a coach and the director of coaching at Complete Human Performance. Ariana's story is a testament to the power of the human spirit and the potential for growth and transformation. Her experiences have shaped her coaching philosophy, emphasizing the importance of empathy, connection, and understanding in helping individuals achieve their goals.

If you want to get in touch with Ariana or CHP, you can find them on Instagram or at their website.

Ariana's Instagram: https://www.instagram.com/running_peaches/
CHP's Instagram: https://www.instagram.com/completehumanperformance/
CHP's Website: https://www.completehumanperformance.com/

Contact Me: justin@assembleperformance.com
IG: https://www.instagram.com/justinsjones/
Website: https://assembleperformance.com/
Youtube: https://www.youtube.com/@justinjonesfitness

Listen as Vanila Singh, MD, MACM, speaks with Maggie Buckley, a woman with Ehlers-Danlos syndrome and chronic pain, about her experience with pain therapies and different healthcare professionals over the years. They have an enlightening discussion about the challenges both patients and healthcare professionals face in optimizing pain management, with a poignant conversation about how stigma plays a role in pain medicine. They close by offering advice to fellow healthcare professionals and patients on how to approach pain management from both perspectives.

Presenters:

Vanila Singh, MD, MACM

Clinical Associate Professor 
Department of Anesthesiology, Peri-operative, and Pain Medicine
Stanford School of Medicine
Palo Alto, California
Chairperson, Former Chief Medical Officer
HHS Pain Management Pain Task Force
US Department of Health and Human Services

Maggie Buckley  

This activity is supported by an independent educational grant from the Opioid Analgesic REMS Program Companies. Please see

https://bit.ly/3mgrfb9 for a listing of REMS Program Companies. This activity is intended to be fully compliant with the Opioid Analgesic REMS education requirements issued by the FDA.

Provided by Clinical Care Options, LLC and in partnership with the American Academy of Physical Medicine and Rehabilitation, Alliance to Advance Comprehensive Integrative Pain Management, Practicing Clinicians Exchange, and ProCE.

Link to full program:

https://bit.ly/3mcDHsi

Angela Parsons is a dedicated mother of three and a seasoned professional with a 20-year corporate career. Throughout her life, Angela has been passionate about healthy eating and leading an active lifestyle. Undiagnosed disorders made it an ongoing struggle for Angela to pursue her fitness goals. Despite her commitment to a whole foods plant-based diet, Angela's health began to decline rapidly. Debilitating chronic pain and a range of unexplained symptoms left her searching for answers. Frustratingly, her concerns were often dismissed by doctors and health professionals, leading Angela to take matters into her own hands. On her journey, Angela found Lipedema, Ehlers Danlos Syndrome, aka EDS, and a genetic variant that causes a sensitivity to the alkaloids in nightshades due to a Butyrylcholinesterase enzyme deficiency. In her pursuit of health, Angela discovered her high-oxalate diet was adding to her symptoms. Motivated to find a solution, she transitioned to a Carnivore diet, which brought about remarkable changes. Angela is on a mission to raise awareness about Lipedema, EDS, and Butyrylcholinesterase deficiency. She thanks Sally Norton, author of Toxic Superfoods, for her help in healing herself and her family!

Find Angela at-

https://thehealingblossom.com/

FB- @nightshadefree

FB- @thehealingblossoms

Sally Norton- Toxic Superfoods: How Oxalate Overload is Making You Sick- And How to Get Better

Find Boundless Body at-

myboundlessbody.com

Book a session with us here!

On this episode I talk about one of the biggest factors that's improved my training - my warmups. 

I'll share the principles behind how I (a powerlifter with Ehlers Danlos Syndrome) changed my warmups to significantly reduce pain, get stronger, and improve my training in general. 

I apologise if this is a bit rambly - these are ideas I'm used to teaching my clients over multiple sessions and I found it hard to articulate it all in one short podcast! It's a little bit technical too - so if it's too rambly to understand or you want a more simplified version, send me your feedback on instagram - @annieshortstrength 

Happy training!

And *full disclaimer* this isn't advice and I'm not a doctor - these are just my own experiences that I'm sharing for entertainment purposes only. Consult your doctor before exercising and NEVER train through pain. 

Listen as Vanila Singh, MD, MACM, speaks with Maggie Buckley, a woman with Ehlers-Danlos syndrome and chronic pain, about her experience with pain therapies and different healthcare professionals over the years. They have an enlightening discussion about the challenges both patients and healthcare professionals face in optimizing pain management, with a poignant conversation about how stigma plays a role in pain medicine. They close by offering advice to fellow healthcare professionals and patients on how to approach pain management from both perspectives.

Presenters:

Vanila Singh, MD, MACM
Clinical Associate Professor
Department of Anesthesiology, Peri-operative, and Pain Medicine
Stanford School of Medicine
Palo Alto, California
Chairperson, Former Chief Medical Officer
HHS Pain Management Pain Task Force
US Department of Health and Human Services

Maggie Buckley

This activity is supported by an independent educational grant from the Opioid Analgesic REMS Program Companies. Please see
https://bit.ly/3mgrfb9 
for a listing of REMS Program Companies. This activity is intended to be fully compliant with the Opioid Analgesic REMS education requirements issued by the FDA.

Provided by Clinical Care Options, LLC and in partnership with the American Academy of Physical Medicine and Rehabilitation, Alliance to Advance Comprehensive Integrative Pain Management, Practicing Clinicians Exchange, and ProCE.

Link to full program:
https://bit.ly/3mcDHsi

Episode 68 of the Long Covid Podcast is a chat with Dr David Saperstein from the Center of Complex Neurology, EDS & PoTS based in Phoenix, Arizona. Dr Saperstein has been working with complex conditions for over 20 years and is now also helping those with Long Covid and post-vaccine symptoms.

This is a fascinating discussion about approaches to diagnoses & treatment, how certain conditions can affect one another as well as what can be done.

I hope you enjoy as much as I did.

Center for Complex Neurology Long Covid page

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.

Transcripts are available on the individual episodes here

Share the podcast, website & blog: www.LongCovidPodcast.com
Facebook @LongCovidPodcast
Instagram & Twitter @LongCovidPod
Facebook Support Group
Subscribe to mailing list

Please get in touch with feedback and suggestions or just how you're doing - I'd love to hear from you! You can get in touch via the social media links or at LongCovidPodcast@gmail.com

**Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Ple...

Aunia returns to the show to talk specifically about her digital marketing business. We quickly revisited her journey to becoming a female business owner, amidst her life full of disabilities that were not properly diagnosed until recently. 

The big takeaway from this show is hearing about Aunia's mindset that allowed her to grow into a successful business owner.  She lives the Japanese proverb: "Fall Down Seven Times, Get Up Eight"

Along with a better understanding of SEO, I learned what bounce rates and "alt tags" are.  We spoke at length about building your brand instead of a website. 

=== 

Rob Rae leaves Datto: https://tinyurl.com/f5nh8nt8

Where is Rob Rae? https://www.channelfutures.com/people-on-the-move/where-in-the-world-is-rob-rae

Florida Man allegedly hides gun inside raw chicken at airport: https://tinyurl.com/2wxrhtva

=== 

Rise Visible, Aunia's Digital Marketing Agency: https://risevisible.com/

Aunia's Art & Photography: https://auniakahn.com/

Create for Healing: https://createforhealing.com/

Aunia Kahn at Wikipedia: https://en.wikipedia.org/wiki/Aunia_Kahn

=== 

Thank you to our monthly podcast partners!

Tom, Two River Computer - https://www.tworivercomputer.com/

Kyle, Pro Tech Guy - https://www.protechguy.com/

Clark, Your Computer Partners

Syncro - https://syncromsp.com/

=== Show Information

Website: https://www.itbusinesspodcast.com/

Host: Marvin Bee

Uncle Marv’s Amazon Store: https://amzn.to/3EiyKoZ

Become a monthly supporter: https://www.patreon.com/join/itbusinesspodcast?

One-Time Donation: https://www.buymeacoffee.com/unclemarv

=== Music: 

Song: Upbeat & Fun Sports Rock Logo

Author: AlexanderRufire

License Code: 7X9F52DNML - Date: January 1st, 2024

Rise Visible is an award-winning digital web design and marketing agency in Eugene, Oregon. Aunia is an artist, author, entrepreneur, instructor and inspirational speaker. 

She shares some of how she got where she is, like eating the same 10 foods in the same order every day. She lived the first 30+ years of her life with an undiagnosed condition that sometimes left her on the brink of death. 

None of that stopped her from becoming a successful business owner, globally awarded artist and inspirational speaker. 

=== 

Rise Visible, Aunia's Digital Marketing Agency: https://risevisible.com/

Aunia's Art & Photography: https://auniakahn.com/

Create for Healing: https://createforhealing.com/

Aunia Kahn at Wikipedia: https://en.wikipedia.org/wiki/Aunia_Kahn

=== 

Ehlers-Danlos Syndrome (EDS): https://tinyurl.com/2m9cd39e

Mast Cell Activation Syndrome (MAST): https://tinyurl.com/4j75zyd8

Postural Orthostatic Tachycardia Syndrome: https://tinyurl.com/4j75zyd8

=== 

Thank you to our monthly podcast partners!

Tom, Two River Computer - https://www.tworivercomputer.com/

Kyle, Pro Tech Guy - https://www.protechguy.com/

Clark, Your Computer Partners

Syncro - https://syncromsp.com/

=== Show Information

Website: https://www.itbusinesspodcast.com/

Host: Marvin Bee

Uncle Marv’s Amazon Store: https://amzn.to/3EiyKoZ

Become a monthly supporter: https://www.patreon.com/join/itbusinesspodcast?

One-Time Donation: https://www.buymeacoffee.com/unclemarv

=== Music: 

Song: Upbeat & Fun Sports Rock Logo

Author: AlexanderRufire

License Code: 7X9F52DNML - Date: January 1st, 2024

Linda Bluestein, M.D., is an integrative pain medicine physician and former ballet dancer who specializes in treating hypermobility disorders in dancers. Following-up from our first chat with Dr. Bluestein in Ep. 20, we dive deeper and explore her unique approach to the evaluation and treatment of this highly specialized population. This is a must-listen for all dance teachers!

In addition to her private medical practice, Hypermobility MD, Dr. Bluestein is the founder and co-host of the podcast, Bendy Bodies with the Hypermobility MD, and former co-host of “Hypermobility Happy Hour.”

Dr. Bluestein is the Director of Education for the nonprofit, EDS Wellness, Inc. and founder and executive director of Bendy Bodies, an organization dedicated to empowering hypermobile performing artists.

She has published a number of original research papers; presents work at national and international conferences, and is a contributing author for the book, Disjointed - Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.

Dr. Bluestein is a member of the Board of Directors for the Bridge Dance Project, the Allergy and Immunology Working Group for the International Consortium on EDS and HSD, the Advisory Board for Doctors for Dancers, and the Resources Committee for the Dance Healthy Alliance of Canada.

More information about Dr. Bluestein can be found on her website, www.hypermobilitymd.com.

Links:

Hypermobility MD https://www.hypermobilitymd.com/

Hypermodbility MD Podcast https://www.hypermobilitymd.com/podcast

Bendy Bodies http://bendybodies.org/

International Association for Dance Medicine & Science https://iadms.org

Ehlers-Danlos Society https://www.ehlers-danlos.com

Social media:

https://www.facebook.com/hypermobilityMD/

https://www.instagram.com/hypermobilitymd/

https://www.instagram.com/bendy_bodies/

https://twitter.com/BluesteinLinda

“God wastes nothing, even disability. He has a purpose for you right where you are.”

After receiving her EMT certification, Cady Bell was on the path to becoming a doctor to use her skills in service overseas. But when she began experiencing severe pain, seizures, stomach issues, and fainting, her life's plan dramatically changed. As Cady searched for the cause of her symptoms, her intensifying health challenges forced her to drop out of school and quit her job.

On the Joni and Friends Ministry Podcast, Cady is sharing her journey to finding a diagnosis for Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder that affects mobility and strength. This invisible disability that has no cure has brought physical and emotional ups and downs, but has also beautifully deepened her relationship with God—something she wouldn't trade for perfect health. Hear how EDS helped Cady discover new joy and purpose and how she’s using her struggles to reach other women who might feel hopeless in their hardships.
 

Follow Cady on Instagram
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Questions or comments? Email Crystal at podcast@joniandfriends.org
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Joni and Friends envisions a world where every person with a disability finds hope, dignity, and their place in the body of Christ. Join us in answering the call in Luke 14:21-23... until his house is full! 

Founded by author and international disability advocate Joni Eareckson Tada, the ministry provides Christ-centered care that serves needs and transforms hearts through Joni's House, Wheels for the World, and Retreats and Getaways. Joni and Friends also equips individuals and churches with disability ministry training and provides higher education courses and internships through the Christian Institute on Disability. Find more encouragement through Joni's radio podcast, daily devotional, or by following us on Facebook,  Instagram, and YouTube.

For more information about Leonard Cheshire's 'Disabled Looks Like Me' t-shirt campaign head to: https://www.leonardcheshire.org/our-impact/stories/disabled-looks-me

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