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Show Notes: Episode 2.12 - Hypermobile Dudes Part 2: An Interview Panel with Three Men with hEDS

Updated: Jun 27

Original Air Date: May 29, 2024


On this week's episode, Luna and Shelli continue their discussion on how Hypermobile Ehlers-Danlos Syndrome affects an often underrepresented community within our Zebra Herd: Men.


In our first-ever panel interview, we continue to talk with Brandon Buccieri, Doug Kremer, and Bryan Jewell about their lived experiences with Ehlers-Danlos Syndrome. Our guests discuss how hEDS affects them, their diagnosis stories, and how they navigate the medical field as Zebras assigned male at birth.


Co-Hosts: Luna and Shelli


Special Guests: Brandon Buccieri, Doug Kremer, & Bryan Jewell

Brandon Buccieri (@susanpossibly on TikTok) | "Hi! I'm Brandon, I'm 32 years of age and I'm a recently diagnosed zebra."
Doug Kremer (@dougkremer on YouTube) | "I'm 48, a Mechanical Engineer, and father to two wonderful Daughters 19 and 20 years old. I was diagnosed hEDS in Nov 2021 at age 45. During my diagnosis journey I learned to really listen to my body and what it was trying to tell me."
Bryan Jewell (@kindaspoony on TikTok) | "I grew up in a military family that frequently moved. In my early 20’s, I joined the United States Marine Corps and served honorably for 8+ years. After two enlistments, I began a new career in industrial construction as a startup and commissioning test engineer on a nuclear waste treatment plant. I later joined Amazon to continue pushing the frontier of internet infrastructure. In 2021, I suffered an injury to my rib cage. The cartilage around my right floating rib folded painfully inward. This started me on an investigatory path that ended in several self-diagnosed, and later doctor confirmed, disorders. The most impactful are hypermobile Ehlers-Danlos Syndrome (a painful connective tissue disorder) and Postural Orthostatic Tachycardia Syndrome (a neurological disorder affecting my ability to sit or stand for more than a few minutes). Soon after my diagnosis, I began sharing my story on social media. Now, in 2024, I am healing from my sixth surgery to repair damage accrued during my active life."

Disclaimer: The information provided in this podcast episode is for educational purposes only and should not be considered as medical advice. Consult with healthcare professionals for personalized guidance on managing Ehlers-Danlos Syndromes.


Important Takeaways:

  • Hydrate! - Don't put it down, refil it!

  • Keep Moving (SAFELY): Isometric exercises and strengthening muscles can help, please consult with a medical professional and/or EDS knowledgeable physical therapist for guidance before starting any kind of exercise program.

  • Many resources (from provider directories to EDS targeted exercise/movment programs) are available online.


Links to Resources and Topics Mentioned In This Episode


Drugs, Medications, Treatments

CHOP POTS Exercise Program - LINK

Counterstrain Technique Information - LINK

Movement for Hypermobility & EDS with Jeannie Di Bon - LINK

Resources

The Ehlers-Danlos Society Provider Directory - LINK


EPISODE TIMESTAMPS

00:00 - Introduction by Shelli

00:35 - Doug's Family and EDS

01:20 - What Co-morbidities Do You Experience: Doug

04:40 - Keep Moving & Stay Hydrated!

05:40 - Bryan's Tips: Take Care of 3 Things (Mind, Body, Spirit)

09:02 - Brandon's Coping Tips

11:50 - Physical Therapists

13:35 - Online Resources

14:50 - Listening To Your Body

18:11 - Doug's Pandemic Revelations

21:35 - Men's Experience With Doctors: Bryan

24:30 - Men's Experience With Doctors: Brandon

27:45 - Men's Experience With Doctors: Doug

30:30 - EDS Write-offs & Playing Catch-up

32:13 - Bryan's Surgeries

35:25 - Resources & Doctor Directory

36:40 - Male Identity and Doctor Interactions

39:00 - Over-Achiever or Under-Achiever?

43:25 - To Be Continued...


Thank you for joining us, and our panel guests for a glimpse of what life with Ehlers-Danlos Syndrome is like for men. If you haven't already, please remember to work your magic (Like, Follow, Share, Subscribe, leave a Review) on whichever platform you're joining us on; it truly helps more people find us and it's an easy (and free!) way to help support the podcast.


You can now also support the show by making a one-time donation here, or a monthly contribution through Spotify! Simply go to our show's Spotify page and click "Support This Podcast". Your support will help us reach our goals to improve our recording quality and make other improvements to the podcast.


Every bit helps, and we appreciate your support, follows, ratings, and shares so much! Thank you, Bendy Baddies!


A special thank you to Brandon, Doug, and Bryan for taking time out of your day to share your stories and experiences with us! We don't often hear about the lived EDS experiences from those assigned male at birth, but hopefully that will change. Thank you all for helping to shed more light from a different Zebra perspective.


Wishing you happy, healthy hypermobility!


-Tiffany | Assistant Producer

Feel free to email to me with any questions!





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