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Old Feb 5th, 2018, 21:12 PM   31
Dill
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They didn't figure it out until I was 14. After that is when they realized that that's what's wrong with the older members of the family.



 
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Old Feb 6th, 2018, 06:37 AM   32
wrapunzel
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Ah, you're lucky. I went to the ER at 14 for something EDS related and only got told I'm hypermobile. I was 21 when I finally heard of EDS. Is your family accepting of the diagnosis? My dad is in such denial I haven't even bothered to reach out to other family I suspect



 
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Old Feb 6th, 2018, 09:17 AM   33
wrapunzel
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Husband wanted me to test. Negative. I tested negative with Linus when I had a backache though, so it doesn't mean much, haha



 
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Old Feb 6th, 2018, 09:28 AM   34
happycupcake
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Can you remind me what EDS stands for? I know what hypermobility is, I read up about it when I thought I had this, but I don't think I do



 
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Old Feb 6th, 2018, 09:39 AM   35
wrapunzel
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Ehlers Danlos Syndrome



 
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Old Feb 6th, 2018, 13:15 PM   36
Dill
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My family was actually very welcoming of the diagnosis. We have a lot of the classic type symptoms, as well, including heart/circulatory problems, petechiae, edema, problems with anaesthetics, etc. And my pain at that point was already debilitating. After years upon years of being tested literally biweekly for JRA and being told that they simply had no explanation, the diagnosis was a relief. And since so many other family members have issues, it's helped for us all to be armed with the knowledge, and to be able to caution doctors, dentists, etc. of potential issues and complications.



 
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Old Feb 6th, 2018, 13:36 PM   37
wrapunzel
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That's so wonderful! (Other than the suffering of having it, I mean). You have Classical EDS?

My extended family acknowledges that we have all kinds of genetic/inheritable issues related to hEDS... a bunch of us have umbilical hernias and poor tooth enamel, issues with dislocation/subluxation while exercising that prevent us from being properly fit, wall-eye/cross-eye, elastic/velvety delicate skin, etc. but they think I'm a little hypochondriac (common issue for EDS people I think) so I am anxious to try to talk to them about hEDS until I have my dad on board. My dad's Dad is the one we all inherited it from.



 
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Old Feb 6th, 2018, 13:41 PM   38
Dill
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I was technically diagnosed with hEDS, but it is currently suspected that we have two strains - one from either side of my biological grandparents' family. My grandmother had almost exclusively classical symptoms, and my bio granddad had exclusively hEDS symptoms. Mom and I have both sets of symptoms, while my sister has only classical symptoms, although two of her daughters are showing hEDS symptoms, so who knows at this point? I know there are varying degrees of symptom crossover between the types, but also a few less common types that seem to be like the Super Value Meals of EDS (get several sets of symptoms at one low price! ) ... If we had any medical practitioners here with any real expertise in the area, I'd love to have a full set of tests done. Some of the types can be tested for, I'd be curious to know the results.



 
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Old Feb 6th, 2018, 14:35 PM   39
wrapunzel
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Every type except hEDS has a genetic marker! And I thiiiiink I heard that they just found a marker for hEDS too.



 
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Old Feb 6th, 2018, 14:36 PM   40
Dill
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I hadn't heard that! That's great to know. I'll have to look into getting the testing done once DH pays off his medical debt (so I can incur some).



 
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