DreamCatcher01
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Posting for Awareness
First off, I know you all don't like selfies but I'm hoping you'll make an exception just this once. A couple of weeks ago @reliturino posted about his wife needing life-saving surgery for a disease called Loey's-Dietz Syndrome. As a fellow LDS (the disease, not the church) survivor I realized how little information there is out there about this relatively new disease so I thought I'd make this post.
Loey's-Deitz Syndrome is a genetic connective tissue disorder that is similar to Ehler's-Danlos Syndrome and Marfan's Syndrome. It was just discovered in 2009 so there's not much solid information about it yet. The main characteristic of LDS is that the blood vessels and arteries become weak and can easily dissect, making frequent imaging of the entire body essential for us. Because of the nature of this disorder age isn't really a factor in the health of your arteries. Babies as young as 6-months old have died from dissections associated with LDS.
Myself and my two oldest kids were diagnosed last summer, along with dozens of other members of my family. It is incredibly aggressive in my family. I've already lost my Grandpa, my aunt and my Mom to dissections. Another of my aunts has had 4 open-heart surgeries in the last year and a half. On June 22nd of this year a cousin of mine - who is 33 - suffered a massive stroke and almost didn't make it. And another of my cousins has been forced to quit his job because his heart will just stop randomly and they're considering putting a pacemaker in his chest. He's 29.
I know this is long but I hope you take a few moments to read it and the links I've posted. The more awareness there is for this terrible disease the more money we can get for research and hopefully we can stop it in it's tracks. Thanks for reading this!
Original post by reliturino: http://imgur.com/gallery/uLJ8uZL
For more info on LDS: http://www.loeysdietz.org/en/
For more insight into my personal journey with Loey's-Deitz: https://wordpress.com/post/tinyelephantsblog.wordpress.com/156
TedTheMan
Leaves a sexy scar.
cptwott
TL;DR
Kilo11
I am also an LDS survivor, the church not the disease though
BlastingYourBarriers
commenting to let you know I downvoted. AND didn't read your whole post
IPutAHexOnYou4c6f7665206d65
so it's passed on ? Have they isolated the gene?
DreamCatcher01
Yes it is passed on. Everyone who carries it has a 50/50 chance of giving it to their kids. They've isolated 4 gene changes that cause LDS.
iMightHaveBeenDroppedOnMyHead
Why are you asshats downvoting this?
DreamCatcher01
I knew I was probably going to be downvoted. But it's something that needs to be out there so I took that risk.