Season 1
Jessica (Coggins) Westmoreland passed suddenly from complications due to VEDS in September 2019 at the age of 27 years old. Patrick Westmoreland, her husband, shares their story and the legacy she left behind in this special episode. Jess was a bright light for those around her, and a force to be reckoned with. Thank you, Patrick for sharing her story and light with all of us. If you have VEDS and have not reached out for support, please check out TheVEDSMovement.org for wonderful resources to help you on your journey.
Megan’s brother suddenly passed away at the age of 39 years old in January of 2018. Her and her father found out later that he passed from an aortic dissection, and the coroner recommended that family members make sure it wasn’t due to a genetic condition. After finding out that she also had an aortic dissection and ileac dissections, she got a blood test and was confirmed to have VEDS (Vascular Ehlers-Danlos Syndrome) in June of 2018. Her children were tested, and her son was also confirmed to have VEDS. Now she knows her brother and mother likely also had the condition. Megan shares how the diagnosis explained some things about her body, as well as how she copes with the diagnosis for herself and her son. Thank you, Megan for sharing your story! 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!
Mariah was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) after a OBGYN recommended she look into it following a hysterectomy. Previously, a CT had revealed an abdominal aortic aneurysm, ileac dissections and a renal dissection after her appendix ruptured, but her doctor did not think it was anything congenital. When she later received the genetic confirmation of VEDS, it explained many things about her body that she struggled with throughout the years. Mariah shares in this episode some of her medical story, but really focuses on the emotional aspects of living with VEDS. She also talks about some of the body hate she has experienced over the years. If you want to connect with Mariah, reach out to me here.
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!
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!
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.
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.
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.
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.
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!