Talking to First Responders about VEDS (Vascular Ehlers-Danlos syndrome)

Поділитися
Вставка
  • Опубліковано 29 жов 2024

КОМЕНТАРІ • 9

  • @ashleym1565
    @ashleym1565 3 роки тому

    That’s such a fantastic idea! Great job spreading awareness!! ❤️❤️

  • @autistictips1161
    @autistictips1161 4 роки тому +2

    Thank you for teaching people. I'm hoping we can get that kind of file. My husband was just confirmed to have vEDS and our 3 year old almost certainly has it. My husband just received his diagnosis Tuesday and even though we've believed this for a year, now it's really overwhelming. It feels like a race to set up all the doctors and surveillance and alerts.

    • @TranslucentOne
      @TranslucentOne  4 роки тому +1

      I definitely remember that feeling. For me it was like a panic race to get everything set up and there were so many days where I couldn’t do much else but cry.
      Sending so much love to your family. It’s such an overwhelming diagnosis to get but know there is a really great community and support system out here. ❤️

  • @annavrana3259
    @annavrana3259 3 роки тому

    New diagnosis tips

    • @TranslucentOne
      @TranslucentOne  3 роки тому

      Get connected with other people and good resources. I direct The VEDS Movement and there are lots of ways to get connected, talk to others, and get good info. Thevedsmovement.org. There’s a lot more out there now for us than there was a few years ago. ❤️

  • @klin9628
    @klin9628 4 роки тому

    I’m not able to use the link you have for the emergency preparedness kit

    • @TranslucentOne
      @TranslucentOne  4 роки тому +1

      That’s odd. It’s working for me :/

    • @TranslucentOne
      @TranslucentOne  4 роки тому +1

      Oh. I think UA-cam changes the links now for some reason and it might have messed up in this video. Try this: thevedsmovement.org/what-to-expect/emergency-preparedness/

    • @klin9628
      @klin9628 4 роки тому

      @@TranslucentOne thank you!!!