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.
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. ❤️
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. ❤️
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/
That’s such a fantastic idea! Great job spreading awareness!! ❤️❤️
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.
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. ❤️
New diagnosis tips
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. ❤️
I’m not able to use the link you have for the emergency preparedness kit
That’s odd. It’s working for me :/
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/
@@TranslucentOne thank you!!!