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October 2016 Moms
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Ehlers-Danlos Syndrome...Any other Zebras out there?

JjrLmm2015JjrLmm2015 member
in October 2016 Moms
So, I've got this little thing called Ehlers-Danlos Syndrome which is a connective tissue disorder. My type was thought to be Cardiac crossover  BUT my last annual check-up was great and the one before that showed very minimal signs. So now they're thinking I just have the Type III Hypermobility which is real fun because my shoulders like to pop in and out of place. I'm a bit worried about my hips doing the same the farther along I get. Anyone else out there have EDS?
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Re: Ehlers-Danlos Syndrome...Any other Zebras out there?

  • queen_frostinequeen_frostine member
    I do not have this diagnosis but I do have a family history of looser connective tissue. I'm worried about this becoming a problem for me. I have been doing my back exercises and hoping that will help. There are some belly-support type belts I am planning on looking into later in the pregnancy to try to redistribute the weight more equitably across my body. 

    If there's no one else in this group, you may want to try searching across the Bump boards for other groups or looking for possibly an EDS board or site that might provide you with some support.


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  • kaimee072712kaimee072712 member
    My brother and all of his 4 children have it too. (He didn't know till after the kids were born) but he has type IV the only fatal type. The foundation claims its 1:250,000 in rarity however as you can see that didn't hold true in my brothers case. 
    http://tinypic.com/r/n4wm87/6
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  • PrimRoseMamaPrimRoseMama member
    JjrLmm2015 said:
    So, I've got this little thing called Ehlers-Danlos Syndrome which is a connective tissue disorder. My type was thought to be Cardiac crossover  BUT my last annual check-up was great and the one before that showed very minimal signs. So now they're thinking I just have the Type III Hypermobility which is real fun because my shoulders like to pop in and out of place. I'm a bit worried about my hips doing the same the farther along I get. Anyone else out there have EDS?
    I do not, but my aunt (we are  not blood related, I am adopted) and her daughter do have it.


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  • cbamama641cbamama641 member
    I don't.  A good friend of mine has a daughter that has it.  She has the type where her skin tears with any type of shearing.  
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  • cantalopes24cantalopes24 member
    I wasn't diagnosed until after my daughter was born (her case is more severe than mine, I never really looked into the connection between my symptoms). I had a lot of hip pain and had to switch cars with my husband because I drove a manual and he drove an automatic and it was so painful for me to shift. If you begin having a lot of discomfort you may want to see a physical therapist and there are pelvic support belts you can wear. 
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