Category: lung collapse

Jeremias Miles Henry
Jeremias, Miles and Henry

Jeremias, Miles and Henry

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Jeremias was diagnosed with vEDS after they got the diagnosis for Miles, one of his three children who is now 9 years old. One of his other kids, Henry, was also diagnosed at that time. If his wife, Rachel, had not pushed for a diagnosis, they likely would not have the answers they have today.

Jeremias is 33 now and has been fortunate to have few life-threatening complications so far. He has had a lot of lung issues, and a partial collapsed lung during a bout of bronchitis earlier this year. They’ve gotten a plan set up at school for the teachers to follow in case of emergencies for Henry and Miles and have good docs in Texas that follow them!

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!

Also, if you have genetically confirmed vEDS and are 18+, please consider enrolling in the vEDS Collaborative Natural History Study. vedscollaborative.org/get-involved

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Lynley
Lynley

Lynley

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Lynley is 21 years old and was diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) following a lung collapse, or pneumothorax. Her dad also had vEDS, which was a clue in for the diagnosis. She tells us her story with vEDS and various issues she has had over the years, including a retina detachment, and how her outlook has changed since diagnosis.

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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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.