Staying Connected

Staying Connected

Sharing our stories with Vascular Ehlers-Danlos Syndrome

Episodes

December 10, 2022 31 min

Katy’s husband, Mike, and her son were diagnosed with VEDS in 2020. In this episode, Katy shares her perspective as a spouse and a mom of loved ones with this condition.

These episode show notes will be updated with a link to the kids book, “Wonderfully Made,” once it is available on Kindle.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDS...

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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 medica...

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November 12, 2022 40 min

In today’s episode, we’re going to talk to Tyler Farley, who was diagnosed with VEDS following a bowel perforation when he was 17. The VEDS diagnosis explained many things for Tyler, including the early death of his father, but also was a really challenging diagnosis to get when he was about to go into college.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical ...

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October 29, 2022 38 min

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 informatio...

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October 15, 2022 26 min

Cristy Gann was diagnosed with VEDS after her son Hunter died of an aortic dissection last year, in September of 2021. Hunter was only 14 years old. In this interview, Cristy shares what happened to Hunter, signs of VEDS that were missed in both her and Hunter, and how she is handling her own diagnosis.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars...

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October 1, 2022 35 min

In today’s episode, we’re going to touch base with Jeremias Tays, who was on the podcast back in 2019. He’s going to share his experience and insights over the last three years, as well as his experience with a bowel perforation that occurred in November 2021.

The original interview with Jeremias in 2019 can be found at https://staying-connected.blubrry.net/2022/10/01/follow-up-with-jeremias-tays/ and on all major podcast players.

...

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September 17, 2022 42 min

Sarah Fulop was diagnosed with VEDS, or vascular Ehlers-Danlos Syndrome, after her sister died from complications following a pregnancy. Her brother also died of an aortic dissection at age 15, when she was about 3 years old. While her family is in some ways the textbook case of VEDS, they inherited the condition through a mosaic mutation, which made the diagnosis harder to recognize. In this interview we’ll be take a dive into the...

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September 10, 2022 5 min

This season we are going to talk to 7 members of our community about their stories and experiences with VEDS. We’ll hear from several people who have a VEDS diagnosis themselves, including a mom who lost her son to VEDS last year, as well as a spouse and mom of people with VEDS. We also have a returning guest to talk about his experience since our last interview together, about three years ago.

Season 4 starts on September 17 and w...

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June 11, 2022 20 min

Dr. Shaine Morris, pediatric cardiologist and researcher at Texas Children’s Hospital, and advocate for our VEDS community, shares how she got involved with the VEDS community and talks about her current research, the CLARITY registry.

To enroll or get more information about the CLARITY study mentioned in this podcast, email Shaine’s research coordinator, Nadia, at nxespahb@texaschildrens.org

Find more information about VEDS, i...

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May 28, 2022 36 min

Charlene’s son, Luke, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 4, after persistent issues with bruising and bleeding led to a hematologist and a diagnosis of Von Willebrand’s at 2 years old, and then later, a rheumatologist who sent him to a genetic counselor who recognized VEDS at 4 years old. Luke was the only one in the family with VEDS.

Heartbreakingly, Luke passed away in October 2021 at the age ...

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May 14, 2022 48 min

Dominick Corso was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 44, after a sudden medical emergency that identified three aneurysms: two iliac artery aneurysms and an abdominal aortic aneurysm. This event led to his doctors suspecting a connective tissue condition and sending him to a geneticist who ultimately diagnosed him with VEDS.

Find more information about VEDS, including support groups, an emergency p...

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April 30, 2022 35 min

Grace Ehrbar was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, at 12 years old after a spontaneous bowel perforation. She is the only person in her family with VEDS. In this episode, Grace shares her experience with the bowel perforation when she was 12, as well as how her knowledge and attitude towards VEDS has changed in adulthood as she learned more about it. She also shares how her diagnosis has impacted her experien...

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April 16, 2022 38 min

Otto Nitschmann was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 30, after he experienced a sudden splenic artery rupture. This event, combined with his hypermobile joints and his dad’s early death from a brain aneurysm, led his rheumatologist to consider VEDS and order a genetic test.

You can reach out to Otto through his Facebook page, https://www.facebook.com/otto.nitschmann

Find more information about VED...

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April 2, 2022 39 min

Heidi Green’s daughter, Isabella, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2021 when she was 8 years old. For years Heidi asked her pediatrician about problems Isabella had, but was told these things were likely due to her being born premature. When she pushed for genetic testing in 2021, she finally got the answer.

Find more information about VEDS, including support groups, an emergency preparedness kit with...

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December 18, 2021 40 min

Christopher Underwood was diagnosed with VEDS at the age of 52, after surviving an aortic dissection and complications following the dissection, including the amputation of the front half of both of his feet. His mother died of an aortic dissection at the age of 82, and his cardiologist recommended he get tested for VEDS. In this episode Chris tells us about what he went through with his aortic dissection and complications that fol...

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December 4, 2021 24 min

Karen DeCoursey was diagnosed with VEDS following her brother, Mike’s, diagnosis in 2017. For Karen, the diagnosis offered answers for many unanswered medical questions in her life, as well as the answer for her father’s death at the age of 49. In this episode, Karen talks about what she went through before and after her diagnosis, including feeling like she was a hypochondriac for many years of her life.

Find more information abou...

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November 20, 2021 38 min

Jonathan Kile was diagnosed with VEDS in 2016 following a series of life-threatening emergencies, including an iliac artery rupture and an aortic dissection. His diagnosis at the age of 42 also offered an explanation for his mother’s early death when he was 5 years old. In this episode, Jon talks about what he survived, how he copes with his diagnosis, and how he feels about the diagnosis of his two kids.

You can keep up with Jon t...

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November 6, 2021 20 min

Lise Voje-Johanson’s daughter, Karna, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) when she was 8 years old in 2019, after her father, Trond, was diagnosed. Lise shares her experience getting and coping with Karna’s diagnosis, as well as information about the medical system in Norway.

This podcast episode is dedicated to Trond, who lost his life to VEDS on October 16, 2021, after the recording of this interview.

Find m...

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October 23, 2021 29 min

Dr. Melissa Russo is a maternal fetal-medicine specialist, clinical geneticist, and researcher in our VEDS community. In this episode, Melissa shares how she got involved, what she’s working on in research, what inspires her, and her personal experience losing a friend to VEDS.

Melissa is pursuing additional research collaborations with Dr. Bart Loeys in Europe, Dr. Shaine Morris in Texas, and Dr. Sherene Shalhub in Washington to b...

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October 9, 2021 31 min

Ashley Rose Marisch was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2017, after previously being diagnosed with FMD, or fibromuscular dysplasia. Her sister, Allyson Jane, ultimately continued researching their family’s experience and history and pushed for the genetic testing for VEDS that led to Ashley Rose, Allyson Jane, and their mother, Dawn, to be diagnosed. Allyson Jane passed away in 2020 of a ruptured aortic...

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