Original Air Date: June 26, 2024
On this week's episode, Luna and Shelli wrap up their discussion on how Hypermobile Ehlers-Danlos Syndrome affects an often underrepresented community within our Zebra Herd: Men. Luna also shares some very exciting and highly anticipated news from the Norris Lab at MUSC regarding a newly released hEDS research report.
In the final part of 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:
ZEBRA NEWS: New hEDS research report by the Norris Lab at MUSC
Men's lived experiences with pain are often minimized, mocked, or denied, and they're told to "toughen up", or other phrases like "no pain, no gain" that paints a picture that pain is weakness.
Links to Resources and Topics Mentioned In This Episode
Resources & Research
• Infographic Post by Cortney Gensemer, PhD - LINK
• Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome - LINK
•CHOP POTS Exercise Program - LINK
EPISODE TIMESTAMPS
00:00 - Introduction by Luna
01:35 - Zebra News: An hEDS Genetic Breakthrough
03:33 - Luna's Thoughts on Norris Lab/MUSC Report
04:40 - Comments From Listeners About Report
06:50 - A Message from the Bendy Mommas
09:15 - Looking Back on the Men's Interview
10:25 - Support Systems: Bryan
12:50 - Support Systems: Brandon
15:05 - Support Systems: Doug
19:35 - How Has hEDS Affected Your Career?
20:58 - Motion is Lotion
23:16 - Zebras in Water
29:20 - Muscle Fatigue, DOMS, and Body Guarding
32:47 - Bryan's Ketamine Therapy Experience
35:50 - Doug's LDN Experience
38:15 - hEDS Occurance Between Men and Women
44:45 - Luna's Final Thoughts
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 again to Brandon, Doug, and Bryan for taking time out of your day to share your stories and experiences with us! Getting to hear your stories, experiences, and helpful tips was illuminating. We appreciate your willingness to be so candid and open with everyone. Hopefully by shedding light on EDS from a men's perspective, others who may be experiencing symptoms will be empowered to speak up and seek treatment.
Luna, Shelli, and the rest of the Hacking Hypermobility Podcast crew will be attending the 2024 Global Learning Conference in Philadelphia, PA (July 17th - 20th)! Be sure to reach out to us if you plan on attending in person, Â we can't wait to see our fellow zebras (and everyone else) there.
Wishing you happy, healthy hypermobility!
-Tiffany | Assistant Producer
Feel free to email to me with any questions!
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