Category: eds

Kelly Gann

Kelly Gann

In today’s episode, we’re going to talk to Kelly Gann, who was diagnosed with VEDS in 2009, when she was in Physician Assistant (PA) school. Kelly shares how she coped with that diagnosis, how her life has changed since then, and how her experience has changed now that her sister, Cristy, has also been diagnosed.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

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

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

The views, information or opinions in the blog, podcast, 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.

Samantha Arche

Samantha Arche

In today’s episode, we’re going to talk to Samantha Arche, who was diagnosed with VEDS following a uterine rupture during the delivery of her second child. Samantha was concerned that she might have VEDS prior to this, but struggled to get genetic testing.

In the episode I mentioned the prior interview with Meg Boeglin, which is available here: https://staying-connected.blubrry.net/2020/01/26/meg-zoe-and-izaak/

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

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

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

The views, information or opinions in the blog, podcast, 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.

Ed

Ed

Ed wasn’t diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) until after he survived open heart surgery. Like many, the diagnosis brought answers to his life, but also came with many challenges.

If you like this podcast and want to hear more, be sure to subscribe!

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

My Story

My Story

As a twist, in this episode my friend Becca asks me about my story!

If you want to check out what I’ve been up to, you can find a link to my youtube

youtube.com/translucentone

Don’t forget to subscribe to this podcast to hear more patient stories with Vascular Ehlers Danlos Syndrome!

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Chrystal

Chrystal

Chrystal was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) along with her mother and brother. She has survived a pregnancy and is the last surviving member of her family who has vEDS. She was an inspiring person to talk to! <3

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Brook

Brook

Brook had years of complications that pointed towards vEDS, or Vascular Ehlers Danlos Syndrome, but it wasn’t until his 40s that he was finally diagnosed. He has been through so much and his story is inspirational!

Stay tuned for more episodes on the last Sunday of every month!