Staying Connected

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 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!

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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 better understand pregnancy outcomes for people with VEDS, and for people who have had children with VEDS who do not have VEDS themselves.

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!

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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 dissection. In this episode, Ashley Rose shares her experience getting diagnosed, and how she copes with the diagnosis and the loss of her sister.

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!

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Mike DeCoursey was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2016 following the diagnosis of his son. The diagnosis came with an explanation for his father’s death at the age of 49 to a ruptured aortic aneurysm- something he had been told did not have a genetic cause. You can read more about his efforts to raise awareness and funds for VEDS at walkwithdeco.com.

There are a few support groups out there for people affected by VEDS, both through The VEDS Movement and the Ehlers-Danlos Society. You can find support groups through The VEDS Movement at thevedsmovement.org/supportgroups and through the Ehlers-Danlos Society through their website at Ehlers-Danlos.com. You can also reach the nurse at The VEDS Movement Help and Resource Center at thevedsmovement.org/ask

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Cathy Bowen tells us about her son, David Daniel Bowen III, and the colostomy reversal that ultimately took his life in 1996 at the age of 14, due to medical mismanagement and the hospital’s lack of knowledge about Vascular Ehlers-Danlos Syndrome (VEDS). Dave’s death left Cathy an empty shell, and she dealt with his loss by putting the love she had for her son towards others with VEDS. She had also made Dave a promise, that this would be her lifelong mission. Shortly after his death, she started advocating for people with VEDS with other mothers. She worked with the EDS National Foundation (now known as the EDS Society) and opened a local branch in New Jersey.  A few years later she co-founded EDS Today, which began as a newsletter for people in the EDS community sharing news and publications about all types of EDS. She was also a member of the original VEDS yahoo email support group back in 1996, which is now the VEDS Facebook group.

Read more about Dave and Cathy’s story, and the Bowen story, here: http://edstoday.org/david-daniel-bowen-iii/

You can also read Dave’s poem, which was read on this podcast, here: https://fibromusculardysplasia.blogspot.com/2013/12/today-i-want-to-share-with-you.html

Find more information about the VEDS Collaborative Natural History Study and enroll at https://redcap.iths.org/surveys/?s=LTWWDAC3XJ

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!

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Erik was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) four years ago at the age of 43, after a spontaneous renal artery dissection that occurred while he was at work. He talks about how he got to his diagnosis, ways his life has changed since, and how he stays positive.

Erik’s family runs an annual chili cook-off event to raise awareness for rare conditions and diseases, called “Chillin for a Cure.” You can find more information about their event on their facebook page, here https://www.facebook.com/Chillin-for-a-Cure-379482395942307

If you are looking for more information about VEDS and support, there are great resources at The VEDS Movement, https://TheVEDSMovement.org. This podcast is not produced by or associated with The VEDS Movement.

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Rebecca was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) in 2016, when she moved to Boston and met doctors who immediately put her medical history together- a history of a renal artery dissection, and two coronary artery dissections, one of which caused cardiac arrest, in an otherwise healthy young woman. In this episode, Rebecca shares her diagnosis story, coping strategies, and ways her life has changed since.

If you are looking for more information about VEDS, there is great information at thevedsmovement.org. This podcast is not associated with The VEDS Movement.

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Dawn was diagnosed with VEDS in 2009, and is now 62 years old. Even though her mom passed away at 38 from an aortic rupture when Dawn was just 8 years old, it wasn’t until after a spontaneous rectal hematoma when she was 51 that her team was able to put the pieces together. In this episode, Dawn shares her experience with her diagnosis, and what she has been through since.

You can learn more about VEDS and find support groups at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement.

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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 sought after answers again with a second geneticist. His genetic test came back positive for VEDS in the summer of 2020.

Matthew shares his story, and how he processed the information of his and his mom’s diagnoses while also living through the pandemic.

You can learn more about VEDS and find support groups at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement.

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