Category: vascular eds

Katy Decoursey
Katy DeCoursey

Katy DeCoursey

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Katy’s husband, Mike, and her son were diagnosed with VEDS in 2020. In this episode, Katy shares her perspective as a spouse and a mom of loved ones with this condition.

These episode show notes will be updated with a link to the kids book, “Wonderfully Made,” once it is available on Kindle.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

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Kelly Gann
Kelly Gann

Kelly Gann

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In today’s episode, we’re going to talk to Kelly Gann, who was diagnosed with VEDS in 2009, when she was in Physician Assistant (PA) school. Kelly shares how she coped with that diagnosis, how her life has changed since then, and how her experience has changed now that her sister, Cristy, has also been diagnosed.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

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Tyler Farley
Tyler Farley

Tyler Farley

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In today’s episode, we’re going to talk to Tyler Farley, who was diagnosed with VEDS following a bowel perforation when he was 17. The VEDS diagnosis explained many things for Tyler, including the early death of his father, but also was a really challenging diagnosis to get when he was about to go into college.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

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Samantha Arche
Samantha Arche

Samantha Arche

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In today’s episode, we’re going to talk to Samantha Arche, who was diagnosed with VEDS following a uterine rupture during the delivery of her second child. Samantha was concerned that she might have VEDS prior to this, but struggled to get genetic testing.

In the episode I mentioned the prior interview with Meg Boeglin, which is available here: https://staying-connected.blubrry.net/2020/01/26/meg-zoe-and-izaak/

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

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Cristy Gann
Cristy Gann

Cristy Gann

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Cristy Gann was diagnosed with VEDS after her son Hunter died of an aortic dissection last year, in September of 2021. Hunter was only 14 years old. In this interview, Cristy shares what happened to Hunter, signs of VEDS that were missed in both her and Hunter, and how she is handling her own diagnosis.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

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Cathy Bowen Red
Cathy Bowen (Dave’s Mom)

Cathy Bowen (Dave’s Mom)

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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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Rebecca
Rebecca

Rebecca

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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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Melinda
Melinda and Nataleigh

Melinda and Nataleigh

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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
Morgan and Cameron

Morgan and Cameron

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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
Patrick

Patrick

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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
Danjela

Danjela

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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
Erica

Erica

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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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Dan Sperry
Daniel

Daniel

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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
Emma

Emma

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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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Karlyandchase
Karly and Chase

Karly and Chase

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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
Lucy

Lucy

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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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Mariah
Mariah

Mariah

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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
Megan

Megan

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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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Patrick And Jess
Patrick and Jessica (Coggins) Westmoreland

Patrick and Jessica (Coggins) Westmoreland

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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
Jenny

Jenny

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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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Heather
Heather

Heather

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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 Delong
Abby and Jon

Abby and Jon

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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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Sherene Andkatie
Dr. Sherene Shalhub

Dr. Sherene Shalhub

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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

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Jennifer
Jennifer and Cade

Jennifer and Cade

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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

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Peter And Katie
Dr. Peter Byers

Dr. Peter Byers

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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.

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Chris
Chris

Chris

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Chris was diagnosed in 1995 with Vascular Ehlers-Danlos Syndrome following his father’s passing. Chris was 22 when he lost his dad and found out he had vEDS. He is now 46 years old and has had two major knee surgeries, a ministroke (transient ischemic attack, or TIA), a fistula, multiple vein ruptures, and lives with a ostomy bag resulting from a bowel perforation in 2014.

You can follow Chris on Twitter: @Van_Tater

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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Kristi
Kristi

Kristi

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Kristi was diagnosed with vEDS after her father died when she was 5 years old. She is now 45 and has had several complications, including a colon rupture. She has also had to learn to stand up for herself with doctors- a struggle many of us can relate to!

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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Privacy Policy

Disclaimer

The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.

About Staying Connected

Staying Connected is a podcast featuring the stories of people affected by Vascular Ehlers-Danlos Syndrome (VEDS). It is produced by Translucent One LLC.