This might explain my whole life (seizures, post partum hemorrhage, brain aneurysms, severe uterine prolapse, dilated aorta, chronic severe spine pain, scoliosis….🤔
@@TheresFuckeryAfoot I used Invitae.com. You order the DNA kit online and it's mailed to your home. You do the swab then ship it back. Once results are processed, a genetic counselor consults with you about results and also submits a report. I was lucky in that my insurance covered this test. I highly recommend them!
My daughter had a bilateral vertebral artery dissection in her brain stem at age 31. Her autopsy report told us she had Vascular Ehlors-Danlos Syndrome. We had never heard of this disease before.
@@Ib90 Hi sorry for not answering sooner, I just saw your comment. No, the main artery at the bottom of her brain stem located at the top of the back of her neck ruptured. She also had 18 brain strokes. I think they happened as a result of the rupture.
I'm in need of some advice as I can't seem to get the help I'm in need of. Is it possible to get an email or is there a way I can talk to you about this?
Hi Sarah, I reached out to Acer Therapeutics. They suggested that you submit an inquiry here - www.acertx.com/patient_physician/medical-information-request/ . I hope that you can find the information you need.
I had a subarachnoid hemorrhage they said I should’ve have survived and am supposed to receiving ongoing monitoring to try to prevent it happening again. However, the neurologist they referred me to said there’s nothing there now so he doesn’t need to see me again. I’m so tired of trying to fight to get proper medical from doctors that don’t know anything about vEDS or EDS in general and often treat you like a hypochondriac or just an idiot that doesn’t know what they’re talking about.
So disturbing how we have to fight for a diagnosis and true help
This might explain my whole life (seizures, post partum hemorrhage, brain aneurysms, severe uterine prolapse, dilated aorta, chronic severe spine pain, scoliosis….🤔
Sending you love 🩷 cortisol breaks down collagen, you might be very stressed from PTSD. You are worthy of support 🩷
Invitae genetic testing is $250 and they have a genetic counselor. In Jan 2025 it goes up to thousands
Undergoing genetic testing for this condition. Good thing technology has advanced and we can now do all the testing online!
What? U can test for vascular EDS online?
@@TheresFuckeryAfoot I used Invitae.com. You order the DNA kit online and it's mailed to your home. You do the swab then ship it back. Once results are processed, a genetic counselor consults with you about results and also submits a report. I was lucky in that my insurance covered this test. I highly recommend them!
@@angellacanfora thank you so much for this info 🙏
Where can I find the test online
My daughter had a bilateral vertebral artery dissection in her brain stem at age 31. Her autopsy report told us she had Vascular Ehlors-Danlos Syndrome. We had never heard of this disease before.
Did she die from brain aneurysm?.. so sorry to hear that.
This sadly happens often with vEDS
I'm so sorry for your loss 💔
I have VEDS. I had a vertebral artery dissection 5 months ago. Very difficult but I am still here (25 male). I'm very sorry for your loss.
@@Ib90 Hi sorry for not answering sooner, I just saw your comment. No, the main artery at the bottom of her brain stem located at the top of the back of her neck ruptured. She also had 18 brain strokes. I think they happened as a result of the rupture.
I'm in need of some advice as I can't seem to get the help I'm in need of. Is it possible to get an email or is there a way I can talk to you about this?
Hi Sarah, I reached out to Acer Therapeutics. They suggested that you submit an inquiry here - www.acertx.com/patient_physician/medical-information-request/ . I hope that you can find the information you need.
@@scottharwood3883 thank you so very much
I had a subarachnoid hemorrhage they said I should’ve have survived and am supposed to receiving ongoing monitoring to try to prevent it happening again. However, the neurologist they referred me to said there’s nothing there now so he doesn’t need to see me again. I’m so tired of trying to fight to get proper medical from doctors that don’t know anything about vEDS or EDS in general and often treat you like a hypochondriac or just an idiot that doesn’t know what they’re talking about.
Could stem cell injections into the aneurysms be more effective treatment?
Is there a genetecist in California?
i have an aortic anurysm is how i was diagnosed by a geneticist!!!
All thanks to Dr Aba for curing me from EDS Am forever grateful ..
Hi have vascular elhers danlos I was born with it
Woot!! Im 28 and will be lucky to live for the next 10 years