my story - life with loeys-dietz

[@annikaewing960]

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!

[@broccolea333]

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 💗

[@MariahMariee]

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!

[@evanorum9755]

Mariah Marie this was very heart warming! your daughter will turn out to be amazing! always remind her that while things are hard sometimes, there are always brighter days ahead!

[@johnb9397]

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

[@evanorum9755]

John B thank you so much!! your support means about!

[@tacos_chaos_666]

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.

[@maggieoneill1616]

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

[@evanorum9755]

maggie o’neill thank you so much! this made me smile :)

[@mariongibson4511]

You are so amazing Eva, loved this video ❤️

[@evanorum9755]

Marion Gibson this means so much! love you marion!!

[@saigeg8056]

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!!

[@abbykemmer9405]

I LOVE THIS SO MUCH!!!!

[@evanorum9755]

Abby Kemmer i love YOU so much!!

[@dragonfly99]

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. 💖💖💖

[@dragonfly99]

Wow thank you so much! I'll let her know. I'm sure she'd love to talk to you! 😊❤❤

[@kayley8890]

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

[@evanorum9755]

THANK YOU SO MUCH!! YOU ARE THE MOST WONDERFUL PART!!

[@dallaskegley7900]

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!!!!

[@evanorum9755]

Dallas Kegley good luck with your surgery!! you’re in my prayers!! 💙💙

[@williambeattie2559]

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

[@evanorum9755]

William Beattie thank you so much!!

[@mfredel85]

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?

[@ParadeTheGospel]

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!

[@simonram8505]

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

[@evanorum9755]

i’ve been taking losartsn for about 3 years now and it has slowed progression significantly!

[@bernadetteharakati5267]

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

[@simonram8505]

How did they manage it?

[@oscarbroughton4138]

I have loeys dietz syndrome too!

[@bigbluezuk]

Probably a CT and not MRI, right?

[@evanorum9755]

PhD Pepper Ive had a lot of CTs, but I have to get a yearly MRI!

[@bigbluezuk]

@@evanorum9755 Have you had the contrast? What a strange feeling, like you peed in your pants.

[@evanorum9755]

PhD Pepper YES!! Every time I go to the ER, I have to get one.