Emergencies I have to watch out for with VEDS (Vascular Ehlers-Danlos syndrome)

[@staceyrabin3529]

I also have VEDS and was diagnosed 12 years ago. I have been told over and over that 80% of VEDS patients will have a catastrophic cardiac event before the age of 40 and most would not survive. Then I am told by doctors that the life expectancy is 48. I am 44 now so it’s really scary. In the past two years, my EDS has become progressively worse and a lot of other health issues have joined in. I just wanted to thank you for putting yourself out there to educate others and to let people like me to know that I am not alone in this battle. It really makes a difference. 💕🥰

[@TranslucentOne]

Hey Stacey! All the love to you. You are definitely not alone ❤️

[@noureenostras6206]

How are you now stacey? I hope you are doing well. Life expectancy could vary from person to person. We're all in this together and i'll be praying for your health

[@jamesmcconnell2473]

@@staceyrabin3529 hi Stacy YT doesn't want you to know about thin skin destroying shilijat

[@sonyabridges9055]

Hey, Katie. Thank you for sharing this. I have been having some orthopedic issues associated with hypermobility. After visiting the ortho, without knowing the family history, the first thing that he asked me was if I had Ehlers Danlos. This scared me because my cousin passed away from an aneurysm associated with vEDS. So, I don't know what the next step is, but the doctor is convinced that EDS is definitely something worth exploring.

[@TranslucentOne]

Hi Sonya! I’m sorry you are going through this and sorry to hear your cousin passed away from an aneurysm associated with VEDS. ❤️ Is the doctor going to refer you to a geneticist?

[@sonyabridges9055]

@@TranslucentOne I am not sure but I am going to see if he can send a referral when I visit him again. I have a lot of unanswered questions and feel that visiting a geneticist is the best next step.

[@yms4355]

Thank you. You're a gem!

[@gppoem3344]

Hi Katie, I’ve got a question or two for you. Would you consider almost gallbladder or appendix ruptures as suspicious for EDS hollow organ ruptures? My uncle died at 4 years and my brother almost died when a baby due to bowel rupture. I’m wondering if I could have a version of EDS, so know I’m questioning all family health stuff. I have a long wait for a genetic test and it’s driving me nuts. I check off symptoms for like 4 or 5 versions of EDS. They all scare me, but nothing like vEDS. TIA - Tammy

[@TranslucentOne]

Hey Tammy! I’m not sure the answer to that question. The nurse in the Help and Resource Center at The VEDS Movement might be able to help. Thevedsmovement.org/ask is how to get in touch with them. ❤️

[@anna_d5150]

I think you’re amazing!

[@TranslucentOne]

Aw thank you!

[@kumashana1997]

I had kids before I knew I had veds. So scary to know I might have passed it to them . I just got diagnosed at 34.

[@TranslucentOne]

Hey Shana! It’s definitely a scary diagnosis and I am sorry you are going through this. ❤️ You’re not alone in this. I do hope your kids don’t have it, but if they do there is a growing support system and hopefully big changes in the future. All the love ❤️

[@hannahfuller9795]

Wait. I'm not supposed to hear a whooshing sound in my head? I thought everyone got that when the stretched in the morning or had a good yawn or something.

[@TranslucentOne]

I don’t get that when I yawn, but I am not sure whether what you are experiencing is normal or abnormal bc I’m not a doctor. This is just an informational video about what I’ve been told to watch out for with VEDS. Maybe check with your doctor?

[@nicolemittelstaedt3191]

I have a coronary artery dissection and no pne knows why. Im 32. Some joint pain and my elbows are hypermobile. Im not sure whats going on no one knows or is helping. I did my own genetic testing and it all came back negative for veds and other types of eds but I dont know.

[@TranslucentOne]

I’m sorry you are going through this! The nurse in the help and resource center at The VEDS Movement is really helpful. She may be able to help you figure out some next steps. You can reach out to her through this page: thevedsmovement.org/resources-and-answers/ask-a-question/ I direct the VEDS Movement-we are a division of the Marfan Foundation, another connective tissue condition. I hope this helps!

[@nicolemittelstaedt3191]

Thanks. I did genetic testing for veds came back negative I’m wondering if you can have it with a negative gene mutation? I’m just not sure what’s going on with me.

[@TranslucentOne]

I think the nurse can help you navigate this and help figure out some next steps, since your VEDS test came back negative. There may be other things to look into and I think she can help with that and answer your questions. Hope she’s able to help!

[@onefabknitternz]

have you looked into Hypermobility syndrome or heds? There is no blood test for those

[@mitotakyrah9244]

Your face is so cute I love it🥰

[@TranslucentOne]

Lol thank you!

[@mitotakyrah9244]

❤️❤️❤️❤️

[@TranslucentOne]

Welcome! :)

[@danchostoyanov3752]

Hey!

[@TranslucentOne]

👋

[@lfrancis8980]

Comment for algorithm

[@TranslucentOne]

Ha! Thank you! :)

[@jamesmcconnell2473]

Yes the middle layer the blood brain barrier ?

[@TranslucentOne]

I’m trying to remember what I was referring to but my guess is the inner layer of the artery wall. The artery walls are made of three layers of tissue, and in a dissection the innermost layer tears. Different from the blood brain barrier from my non-medical professional understanding

[@jamesmcconnell2473]

@@TranslucentOne from what I'm seeing from the video. What lack of medical technical understanding ? EDS survivor channels have that out the wazoo .

[@jamesmcconnell2473]

@@TranslucentOne I come from fibromyalgia land where there's none of that

[@jamesmcconnell2473]

@@TranslucentOne shilijat is the ticket for EDS pretty sure

[@jamesmcconnell2473]

@@TranslucentOne that's truly hilarious Ms Wright. Your thumbnail looks like you're trying to remember something