Staying Connected

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. 

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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!

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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.

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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!

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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!

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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!

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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!

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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!

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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!

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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

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