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!
Comments