Staying Connected

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 kind of complications Nataleigh lives with, including POTS, Chiari malformation, a tethered cord, chronic pain, and gastrointestinal issues, as well as how they’ve coped over time with these issues and the VEDS diagnosis.

To learn more about VEDS, or get connected with others who have it, visit thevedsmovement.org.

This podcast is not affiliated with The VEDS Movement.

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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 has done to raise awareness and fundraise for VEDS.

You can learn more about VEDS and get involved in The VEDS Movement by reaching out at TheVEDSMovement.org

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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 diagnosed. He talks openly about his medical history and family medical history, while also discussing how he’s handled the diagnosis in the last few months and his search for a new normal.

Resources Patrick talks about in this episode are the VEDS support groups through TheVEDSMovement.org, as well as the VEDS Facebook group.

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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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 back positive for VEDS and she is the only one in Austria that she knows with VEDS.

Danjela always felt like there was an underlying condition that affected her, her mom, and her grandfather, so when she received her diagnosis, it was a relief to know and be able to prepare for emergencies and adjust parts of her care plan. She has continued to live her life passionately, and shares her story of carotid artery dissections and close calls with incredible positivity.

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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 faith, her husband, her son, knowledgeable doctors, and a supportive community have helped her persevere and live positively despite of her diagnosis with VEDS.

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Daniel was diagnosed with VEDS (Vascular Ehlers-Danlos syndrome) in January 2020, after an emergency surgery for an abdominal aortic aneurysm (AAA) in October 2019. The AAA and other complications during and after the surgery led the vascular surgeon to believe Daniel had an underlying connective tissue condition. He saw a geneticist shortly after this emergency surgery, who ordered a genetic test and diagnosed him with VEDS. Daniel shares his story of diagnosis and how he’s handling it from the perspective of someone very newly diagnosed.

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Emma was diagnosed with VEDS when she was 20 years old, not long after losing her brother and father to VEDS in the same year. She grew up knowing that VEDS was in her family; seven people, including her, have now been diagnosed. With the decision to be genetically tested left up to her, it was her brother’s sudden passing at 25 that led her to do so.

She tells the story of how she was diagnosed, what it was like knowing this was in her family growing up, and the anxiety that comes with living with VEDS. She also tells us how she met Justin, her husband, and their decision to start the Defy Foundation together as college students.

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Karly’s son Chase was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) three years ago at 2 years old. Chase had experienced several broken bones with minimal injury, and originally the physicians were concerned he might have Osteogenesis Imperfecta. Karly shares her experience getting the diagnosis of VEDS and what that meant for Chase’s future. Since then, Chase has been hospitalized for bowel complications several times, but he is a resilient young boy, and as parents, Karly and her husband try to surround the medical experiences with positivity.

Karly also raises awareness of VEDS through a playlist on her youtube channel, Karly’s Kreations. https://www.youtube.com/channel/UCg3XlExCbddWLRVaG2_-TGA

Don’t forget, REDS4VEDS Day is May 15th this year! Wear red and share the hashtag #REDS4VEDS!

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Lucy was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) after a close call with death; a ruptured splenic artery. She was lucky to survive, and during that event the surgeons also found several other aneurysms in her body. She received genetic confirmation of VEDS 8 months later. One of her daughters, Zaria, who is now 8 years old, was also diagnosed. Lucy tells her story with VEDS all the way from New Zealand!

To connect with others with VEDS and get more information about the condition, visit thevedsmovement.org

This is a special episode leading up to REDS4VEDS Day on May 15th! Join us by wearing red, sharing a picture, and using the hashtag #REDS4VEDS!

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