I finally found a KZbinr who has LDS! A lot of my family members have it and I have a lot of complications from it. I am so thankful that you uploaded this video!

What do you guys take for protection of the aorta? I heard beta blockers do nothing, with only the exception of losartan.

Thank you so much for sharing your story. You have a such fantastic attitude and it’s super inspiring! I also have LDS and it has been such a wild journey and incredibly isolating at times. I appreciate people like you sharing your story. Keep your head held high. Big love to you angel 💗

I have loeys-dietz.. i found out after my aorta ruptured near the heart.. i have a medically managed dissection from chest to iliacs

Probably a CT and not MRI, right?

I was diagnosed with lds a few months ago and about to undergo aortic root aneurysm surgery at the Cleveland clinic here in the next month or so. Good luck to you!!!!

i have just been diagnosed today and i ended up here looking after some infos etc I would be interested in some interviews from other people that have this genetic disease. Thank you for your testimony and for being brave enough to post this.

Thanks for sharing your story! My wife's dad has this condition and we feel that maybe my wife has it, at least some symptoms are pointing to that possiblity so we need to get that checked out ASAP. My wife's dads dad passed away suddenly from it when he was about to be born, and several of his siblings have it (large family). His aorta has gradually gotten bigger over the years but has been doing fine generally but last year they did surgery to replace the valve with an artificial one as it was getting too big. For the longest time he thought it was Marfans which is related. He was told by some top guy in the field to increase vitamin C as that helps with connective tissue, but that was before he found out it was specifically LDS, but it may still help, I'll have to look into it for my wife, even if just to slow down the issue a little. She's been having a lot of joint pain and unexplained pain so that's why we think we need to get her checked out. Years ago, I think for our 2nd child (we have 5 now!) She got her heart checked before delivery just to make sure she didn't show signs of Marfans, and it all checked out fine. But that was 7ish years ago... Time to get checked again! Anyway just wanted to share a brief part of our story! It's great to find stuff like this on KZbin, which acts as a way of support for us who also are going thru it!! Thank you so much!

My whole family, including myself got diagnosed with LDS in 2016 and girl i know your struggle. If you ever wanna talk, message me!! I would love to talk with somebody who has been through this whole thing too!!

I have loeys dietz syndrome too!

Hi Eva. Thank you for posting your story so bravely. I know it can be hard to put stuff like this out there and risk being judged, but this will help many people who come across it. My name is Faye, I'm 38 and was just diagnosed myself. They're now testing my daughter. We were first diagnosed with Ehlers Danlos Syndrome, but when the gene test results came back, it changed everything. You're probably the same age as my daughter and I see similarities in your experiences. Anyway, thank you for this video, and I wish all good things for you in life. 💖💖💖

you are the most amazing person eva:) hang soon! love and miss you! keep being strong and being an inspiration to everyone

OMG honestly so heartbreaking. keep fighting!! and i also love the song at the end!

You're an impressive young lady, keep up the fight.

My daughter is 7, turning 8 in July and she has Loeys-Dietz, she's also a very normal child & very active. She also has pains and everything, people keep telling me growing pains... on and on, but I know it's because of the syndrome. Her heart is doing very well but as she gets older it makes me more and more nervous! This was very informative and shed light that she will be as okay as she can be in her childhood. Thank you for this!

You are so amazing Eva, loved this video ❤️

Hi Eva, I am so proud of you! This is so raw and open, I love it! I have a question for you to answer-when you talked about your kids having a chance of having L-D, you said something about it getting worse each generation. What did you mean by that?

I LOVE THIS SO MUCH!!!!

OH MY GOODNESS EVA THIS IS WONDERFUL🌸🌸💓💕🥰