Carlos Horn
Carlos Horn

Carlos Horn

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Carlos Horn was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) last year, in 2023. With a history of multiple aneurysms and a stroke, a doctor sent him to a vascular specialist who wanted to rule out genetic causes. In this episode, Carlos talks about the events that led to his diagnosis, how his lifestyle has changed since, and his hopes for the future of research. 

Here is a link to some information about stem cell use in regenerative therapy from Mayo Clinic: https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/in-depth/stem-cells/art-20048117 

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. 

If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit 

https://calendly.com/d/z7h-2cc-g33

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email vedscoll@ohsu.edu 

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:

https://marfan.org/calendar

Join a Walk for Victory:

https://marfan.org/walk

Help and Resource Center

https://marfan.org/ask

https://loeysdietz.org/ask

https://thevedsmovement.org/ask

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Deitz while supporting Staying Connected at my printify pop-up store: https://staying-connected.printify.me/products 

You can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Scott
Fiona McIver

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

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Disclaimer

The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.

About Staying Connected

Staying Connected is a podcast featuring the stories of people affected by Vascular Ehlers-Danlos Syndrome (VEDS). It is produced by Translucent One LLC.