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!
Matthew was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2020, when after years of struggling to get answers, he came across characteristics of VEDS, including sleeping with his eyes open, on The VEDS Movement website in early 2020. Knowing he had so many of the characteristics, and previously had been dismissed by a geneticist, he … Continue reading Matthew
Melinda and Nataleigh
Melinda’s 11 year-old daughter, Nataleigh, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, after 8 1/2 years of medical issues that finally led to a genetics appointment. At first, she was diagnosed with hypermobile EDS, but Melinda pushed for a genetic test to rule out VEDS and she unexpectedly came back positive. Melinda shares what … Continue reading Melinda and Nataleigh
Morgan and Cameron
Morgan’s son, Cameron, was diagnosed in July 2019 with Vascular Ehlers-Danlos Syndrome (VEDS), at 10 years old. This diagnosis came after Morgan continued to press for answers several years after his father, Mike, passed away from a sudden aortic dissection. Morgan shares how they’ve coped with the diagnosis, as well as the advocacy work she … Continue reading Morgan and Cameron
Patrick was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) earlier this year by the National Institutes of Health (NIH) at 54 years of age following whole exam sequencing. With a history of bowel complications and perforations, as well as two other rare conditions, Patrick was grateful to be welcomed by the VEDS community when he was … Continue reading Patrick
Danjela received her diagnosis of Vascular Ehlers-Danlos syndrome, or VEDS, just two months prior to the recording of this podcast. After her mom suddenly died of an aortic rupture, Danjela started researching and discovered Vascular EDS. She pushed her doctors for genetic testing, which took a couple months of convincing, but her test results came … Continue reading Danjela
Erica was diagnosed with Vascular Ehlers-Danlos syndrome, or VEDS, about eight and half years ago after a series of life-threatening medical events and the birth of her son, Reed. She discusses her colon ruptures, uterine rupture, and the discovery of 5 aneurysms that finally led to her diagnosis of VEDS. She talks about how her … Continue reading Erica
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