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VEDS Newly Diagnosed Q&A - Shared screen with speaker view
Fran
23:35
Hello Shaine. Hello Katie
Michelle
23:46
Hello everyone!
Shaine Morris
23:48
Hi!
maki
37:25
i do have a lot of gastrointestinal problems. i am 18
Shaine Morris
38:44
Thanks for sharing! Yes, many of our teens have GI issues-pain, constipation are the most common. When did your start? Usually it seems in pre-teen years but we are always learning more.
maki
41:22
it all started at 15 years old. everything was more serious. in general they are problems of constipation (minimum 4 days without going to the bathroom), a lot of pain and i have even had many symptoms of gastroparesis
Shaine Morris
41:44
Thank you for sharing.
Shaine Morris
47:13
Hopefully you have someone following you for this?
maki
51:53
a gastro? it is very difficult for someone like me who is in mexico to get specialists who know veds
Kuma
52:08
what should I do if I don't have any doctors who knows veds here ? do I need to move to see someone? I was diagnosed and have no help here ..
Katie Wright, The VEDS Movement
56:50
Hey Kuma! Please submit your question to the Q&A feature in zoom. Thank you!
Kuma
57:10
ok will do
Shaine Morris
01:08:11
Hi Maki- Usually here it would be a GI doc, although I can see how that may be harder in Mexico. A teaching hospital near you may have someone who is willing to learn and who can help. Many people who don’t have VEDS also have gastroperesis and similar symptoms, and there are docs who specialize in these conditions at large centers, like in Mexico City
maki
01:12:54
i have tried to go to specialists but it is still very difficult for them to understand. some years ago i was in a clinic with several specialists and after a while i realized that in that clinic they did not treat me for veds, but it was for depression, pain and being overweight. when i have internal ruptures, which I have had a couple, they don't really treat me in the ER so i try to better stay at home
Trisha
01:17:24
Where do I submit specific VUS questions. I have VUS in COL3A1 & COL12A1.
Katie Wright, The VEDS Movement
01:17:38
please submit to thevedsmovement.org/ask
Katie Wright, The VEDS Movement
01:17:39
thank you!
Patricia Grether
01:22:56
Thank you very much