We've had a lot of trauma with doctors. We don't have a single physician right now and we've already lost two since my husband's VEDS diagnosis not even two weeks ago. Some of the doctors you described sounded awful and similar to what we've experienced. Previously we thought we were dealing with HEDS and just my (plentiful but hopefully not life-threatening) chronic conditions. But now that we know it's VEDS it's even more frustrating that we can't find any doctors who will see him or the ones that did, dismissed the seriousness. He's trying a cardiologist this week but I wasn't entirely sure of the difference between cardio and vascular doctor, and I'm not sure if that doctor is both. And we need a new intestinal doctor since most of his troubles are intestinal, and they keep just saying "probably IBS, here's anti anxiety meds." It could be tears, they don't know. And there doctors will always try to do dangerous tests, I've been telling them for over a year now, "I'm pretty sure it's VEDS, a scope is unsafe." And similar. It's an overwhelming amount of responsibility to keep a doctor from gravely harming yourself or your family. I love your videos and thank you for everything you're doing.
It’s such a frustrating and scary problem both individually and knowing it’s present on a large scale. I hope the cardiologist works out. Some people end up with a cardiologist who orders their scans, some people have both a vascular and a cardio, and some people just have a vascular surgeon, depending on what’s available. I know Dr Shalhub, one of the experts in WA, is also seeing people via telemedicine now. She’s a vascular surgeon champion for the community. If you need help finding someone I would recommend reaching out to the Help and Resource Center at The VEDS Movement, the nurse there really tries to help as best as she can. Hoping the best for you both!!
@@TranslucentOne thank you. I didn't realize there was a nurse there. Once our son's test comes back I'm going to try to see if I can get a specialty clinic to take them both too and hopefully consult with whatever local doctors we manage to establish.
When I went in to my rheumatologist appointment looking for an EDS diagnosis and found out right away he had old information still. He said , so there are six types of EDS… I said actually there are 13.. that moment I knew it wasn’t the right fit. He told me he didn’t have much knowledge on EDS but personally would diagnosis me with fibromyalgia with hyper mobility.. 🤦🏻♀️. He also said he was sorry my time was wasted because he would have had me gone to a different doctor if he had known I was looking into if I had it or not. I was diagnosed shortly after by a genetic dr and again by a pain management doctor who “specializes” in Eds.
I’m clinically diagnosed with hEDS. My four year old is going to the genetic doctor in August and if she is also diagnosed I’ll likely get genetic testing to rule out the others.
We've had a lot of trauma with doctors. We don't have a single physician right now and we've already lost two since my husband's VEDS diagnosis not even two weeks ago. Some of the doctors you described sounded awful and similar to what we've experienced. Previously we thought we were dealing with HEDS and just my (plentiful but hopefully not life-threatening) chronic conditions. But now that we know it's VEDS it's even more frustrating that we can't find any doctors who will see him or the ones that did, dismissed the seriousness. He's trying a cardiologist this week but I wasn't entirely sure of the difference between cardio and vascular doctor, and I'm not sure if that doctor is both. And we need a new intestinal doctor since most of his troubles are intestinal, and they keep just saying "probably IBS, here's anti anxiety meds." It could be tears, they don't know. And there doctors will always try to do dangerous tests, I've been telling them for over a year now, "I'm pretty sure it's VEDS, a scope is unsafe." And similar. It's an overwhelming amount of responsibility to keep a doctor from gravely harming yourself or your family.
I love your videos and thank you for everything you're doing.
It’s such a frustrating and scary problem both individually and knowing it’s present on a large scale. I hope the cardiologist works out. Some people end up with a cardiologist who orders their scans, some people have both a vascular and a cardio, and some people just have a vascular surgeon, depending on what’s available. I know Dr Shalhub, one of the experts in WA, is also seeing people via telemedicine now. She’s a vascular surgeon champion for the community. If you need help finding someone I would recommend reaching out to the Help and Resource Center at The VEDS Movement, the nurse there really tries to help as best as she can. Hoping the best for you both!!
@@TranslucentOne thank you. I didn't realize there was a nurse there. Once our son's test comes back I'm going to try to see if I can get a specialty clinic to take them both too and hopefully consult with whatever local doctors we manage to establish.
I feel the main take-away from this is that most doctors are sociopaths.
When I went in to my rheumatologist appointment looking for an EDS diagnosis and found out right away he had old information still. He said , so there are six types of EDS… I said actually there are 13.. that moment I knew it wasn’t the right fit. He told me he didn’t have much knowledge on EDS but personally would diagnosis me with fibromyalgia with hyper mobility.. 🤦🏻♀️. He also said he was sorry my time was wasted because he would have had me gone to a different doctor if he had known I was looking into if I had it or not.
I was diagnosed shortly after by a genetic dr and again by a pain management doctor who “specializes” in Eds.
Ugh I’m sorry you went through that! So frustrating. What type of EDS were you diagnosed with?
I’m clinically diagnosed with hEDS. My four year old is going to the genetic doctor in August and if she is also diagnosed I’ll likely get genetic testing to rule out the others.