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Dr. Peter Byers has been an integral part of the Vascular EDS (VEDS) community since the 1970s, and has become part of the family to many of those affected by vEDS. In this special episode, Peter shares his history with vEDS and excitement for progress for the community that is happening now. This episode was recorded live on 7/13/19 in Houston at the Marfan Foundation Annual Conference. You can even hear the air conditioning at the hotel wake up part way through the episode! If you want to learn more about the vEDS Collaborative and enroll in the research study, visit vEDSCollaborative.org. If you want to be a part of this podcast, or have genetically confirmed vEDS and have not been integrated into our group, reach out at thetranslucentone@gmail.com.
Jennifer’s son Cade was diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) at 14 years old as an incidental finding following exome sequencing for autism. Jennifer had not heard of vEDS prior to the call from the genetic counselor, but had previously had Cade evaluated for Marfan Syndrome (for which he tested negative). Cade is now 16 years old and recently got to meet others his age at the Marfan Annual Conference earlier this month. Learn more about the vEDS Natural History study here: https://www.vedscollaborative.org/news
Sherene Shalhub is a vascular surgeon who has been working with patients with Vascular Ehlers-Danlos Syndrome (vEDS) alongside Dr. Peter Byers, who was also featured in a special episode of Staying Connected last month. Sherene took some time during our weekend at the Marfan Foundation Annual Conference to talk to me about her story and experience with vEDS, including her work to further research and human connection through the vEDS Collaborative. She has been an amazing advocate for those with vEDS, and has become family to me. If you want to enroll in the vEDS Collaborative Natural History Study, visit vedscollaborative.org/get-involved If you have vEDS and want to be on this podcast, or just want talk to someone else with vEDS, reach out to me at thetranslucentone@gmail.com
Jeremias was diagnosed with vEDS after they got the diagnosis for Miles, one of his three children who is now 9 years old. One of his other kids, Henry, was also diagnosed at that time. If his wife, Rachel, had not pushed for a diagnosis, they likely would not have the answers they have today. Jeremias is 33 now and has been fortunate to have few life-threatening complications so far. He has had a lot of lung issues, and a partial collapsed lung during a bout of bronchitis earlier this year. They’ve gotten a plan set up at school for the teachers to follow in case of emergencies for Henry and Miles and have good docs in Texas that follow them! 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! Also, if you have genetically confirmed vEDS and are 18+, please consider enrolling in the vEDS Collaborative Natural History Study. vedscollaborative.org/get-involved
Abby’s son, Jon, was diagnosed several years ago with vEDS at the age of 2. He had been to 7 different doctors by the time Abby pushed for a genetic consult, and even then, the first geneticist said there was nothing wrong. Jon would get bruises just from a diaper change, and had a lot of skin splitting that pointed to vEDS. He also has some bad gastrointestinal issues, like many of us with vEDS can relate to. He is now 7 years old and is a hoot! Abby spends a lot of time advocating for members of our community and it was amazing getting to hang out with her so much this summer! 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!
Heather was diagnosed with vEDS after several back-to-back medical events in 2015, including a kidney infarction and a carotid cavernous fistula. She had also previously had a colon rupture and an early delivery of her son. Luckily, an ER doc from Paris noticed the signs of vEDS during an emergency room visit. She had complications throughout her life that pointed to vEDS, but these had gone unrecognized. Her mother had also passed away at 37 unexpectedly with no explanation. Heather’s diagnosis with vEDS has provided some explanation for her mother’s death, as well as given her perspective to live her life the fullest. 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!
This is a special episode where I talk to my mom about the medical mysteries when I was growing up, and how it felt when we finally got the diagnosis of Vascular Ehlers-Danlos Syndrome (vEDS) at the age of 28 years old. The beginning of this episode really focuses on the medical aspects of me growing up, while the second half focuses on how we coped with the diagnosis as a mother and daughter. 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!
Bradley was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) a day before his 47th birthday, and a few years after his younger brother passed from an aortic aneurysm. Just a month after his diagnosis with VEDS, he himself suffered an aortic dissection and survived, despite the odds! Bradley has been through so much since diagnosis, and I am so grateful that he came onto the show to tell his story. Just a year ago, he woke up from the medically induced coma from his life-saving surgery. This episode was recorded on December 23rd, 2019. 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! Happy holidays!
Meg shares her diagnosis story with Vascular Ehlers-Danlos Syndrome (VEDS), and talks about how it has impacted her perspective on life and parenting, and career as a nurse. She was diagnosed with VEDS 9 years after a life-threatening maxillary artery aneurysm. Following her diagnosis, her daughter Zoe was diagnosed and she became pregnant with her second child, Isaak, who also has VEDS. Meg has become an amazing advocate for others with VEDS through volunteering her time and through her career. 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!
Jenny was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) in January 2019 after finding out she had several dissections in her vertebral and carotid arteries. Even then, her doctors did not suspect VEDS and she was shocked when her genetic test came back positive. She explains in this episode how her diagnosis explained some of the medical mysteries in her history, and shares her experience dealing with the diagnosis. If you have VEDS and have not connected with someone else who has it, please check out thevedsmovement.org for ways to connect! It is such a wonderful resource!