24 episodes

I started Staying Connected as a way to connect with other people diagnosed with or impacted by Vascular Ehlers Danlos Syndrome, or vEDS. I myself was diagnosed in 2017, and meeting people with this syndrome is a struggle as we are few and far between! In this podcast I connect with other people whose lives have been impacted by vEDS, getting a chance to hear and share their stories!

Staying Connected Katie Wright

    • Science

I started Staying Connected as a way to connect with other people diagnosed with or impacted by Vascular Ehlers Danlos Syndrome, or vEDS. I myself was diagnosed in 2017, and meeting people with this syndrome is a struggle as we are few and far between! In this podcast I connect with other people whose lives have been impacted by vEDS, getting a chance to hear and share their stories!

    Bradley

    Bradley

    Bradley was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) a day before his 47th birthday, and a few years after his younger brother passed from an aortic aneurysm. Just a month after his diagnosis with VEDS, he himself suffered an aortic dissection and survived, despite the odds! Bradley has been through so much since diagnosis, and … Continue reading Bradley

    • 31 min
    Joy (Katie’s mom)

    Joy (Katie’s mom)

    This is a special episode where I talk to my mom about the medical mysteries when I was growing up, and how it felt when we finally got the diagnosis of Vascular Ehlers-Danlos Syndrome (vEDS) at the age of 28 years old. The beginning of this episode really focuses on the medical aspects of me … Continue reading Joy (Katie’s mom)

    • 39 min
    Heather

    Heather

    Heather was diagnosed with vEDS after several back-to-back medical events in 2015, including a kidney infarction and a carotid cavernous fistula. She had also previously had a colon rupture and an early delivery of her son. Luckily, an ER doc from Paris noticed the signs of vEDS during an emergency room visit. She had complications … Continue reading Heather

    • 45 min
    Abby and Jon

    Abby and Jon

    Abby’s son, Jon, was diagnosed several years ago with vEDS at the age of 2. He had been to 7 different doctors by the time Abby pushed for a genetic consult, and even then, the first geneticist said there was nothing wrong. Jon would get bruises just from a diaper change, and had a lot … Continue reading Abby and Jon

    • 39 min
    Jeremias, Miles and Henry

    Jeremias, Miles and Henry

    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. … Continue reading Jeremias, Miles and Henry

    • 27 min
    Dr. Sherene Shalhub

    Dr. Sherene Shalhub

    Sherene Shalhub is a vascular surgeon who has been working with patients with Vascular Ehlers-Danlos Syndrome (vEDS) alongside Dr. Peter Byers, who was also featured in a special episode of Staying Connected last month. Sherene took some time during our weekend at the Marfan Foundation Annual Conference to talk to me about her story and … Continue reading Dr. Sherene Shalhub

    • 21 min

Customer Reviews

Cheshie1103 ,

Great podcast!

Definitely worth subscribing to.

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