Special: Emotional Recovery

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After my recent renal dissection, kidney infarction, and iliac dissection with Vascular Ehlers-Danlos Syndrome (VEDS), I wanted to know what emotional recovery was like for others after medical events. This episode features clips of people with VEDS, Marfan, and Loeys-Dietz syndromes, sharing what emotional recovery was like for them after diagnosis, major medical events and the loss of loved ones.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org (thevedsmovement...) , loeysdietz.org (loeysdietz.org) , and marfan.org (marfan.org) .
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit
calendly.com/d...
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email vedscoll@ohsu.edu (mailto:vedscoll@ohsu.edu)
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
marfan.org/cal...
Join a Walk for Victory:
marfan.org/walk
Help and Resource Center
marfan.org/ask
loeysdietz.org...
thevedsmovemen...
Support
You can support this podcast by subscribing to my Patreon at / translucentone
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
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Опубликовано:

10 сен 2024

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Комментарии : 5

@matthewboldero9953 2 месяца назад

Hello Katie, firstly thank you so much for your channel and videos, you've helped me understand and cope my own illness since my own diagnosis a couple of years ago. I still have unresolved issues and concerns about my future but hearing others with similar experiences and sometimes exactly the same medical history is helping me.

@oneandonlyone1 3 месяца назад

I cannot imagine what it is like for children - but I am almost 50, and I get teased by adults constantly. I was finally diagnosed 6 years ago with Marfan syndrome and hypermobile EDS. After decades of trying to find out what was "wrong with me". I have heard adults say, people with marfan syndrome cannot have kids. Or that Marfan is not a disability. Or in some cases, Marfan does not exsist at all. Would you believe that some of these people have been doctors ? When the hospital lists me as priority over other people in the emergency waiting room - people get so mad that I get to be seen before them/when they have waited longer than me. I stay at home most days, and I receive a disability pension. I struggle with digestion, circulation, brain fog, seeing double, dural ectasia, my joints are killing me. I had a blood clot years ago in my juggular. The affected arm gets bad some days. The blood just does not go through easy. It is my juggular, so i have pressure in my head like you would not believe. sorry for the long message. Just sick of adults teasing me. I am probably not the only one.

@TranslucentOne 3 месяца назад

Thank you so much for sharing this. The lack of education and level of teasing is frightening and frustrating. Have you connected with others with Marfan in the community?

@oriolgomez412 3 месяца назад

(M 26) Hi, recently I have been looking into some EDS symptoms because I think I tick a fair amount of boxes (see-through skin with visible veins, no earlobes, large and bony fingers with veins, skin hyperflexibility, easy bruising) and I'm worried I could have some form of EDS. The only thing is that I have had a leg operation on the hip and one on the knee (both related to each other but with years apart one from the other), and had no complications during the operation or the post-op. Could you have EDS (I am a bit hypochondriac, so let's add vEDS), and not having complications after a big surgery on the hip and a small one on the knee? I keep going to the doctora with the facts, but they always refuse to further examination because "you can't have EDS because it's so uncommon". Recomendations ? Thank you

@TranslucentOne 3 месяца назад

Hi! I’m not sure about the hip surgery but I had knee surgery almost ten years before my diagnosis and did fine. Doesn’t hurt to chat with a doctor about it and if you have trouble finding testing to ease your mind, there are tests available through fightveds.org and invitae, as well as color. I hope this helps and that you find your answers!