Anyone familiar with Ehrls-Danlos Syndrome?

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amother

Mon, Feb 25 2013, 9:18 pm

Supposedly a very rare disorder, my doctor is convinced my baby has it because she is hyper flexible and would like for us to go to specialists to check into it. I am completely freaked out! I read up about it online and it seems like it is an inherited condition, however no one in our families ever had it and I have other healthy children. I don't know why my doctor is so convinced that she has it. There are other things that a kid with very flexible limbs can have!

MaBelleVie

Mon, Feb 25 2013, 9:43 pm

Hopefully it is just hypermobility, but I'm assuming the doctor feels this condition should be ruled out. I hope you have a good outcome.

manhattanmom

Mon, Feb 25 2013, 9:46 pm

how old is your baby?

amother

Mon, Feb 25 2013, 9:52 pm

Lots of people have EDS and never realize it since it never impacts them. If the doctor suggested it, why not have it checked?

amother

Mon, Feb 25 2013, 10:04 pm

That's Ehlers-Danlos. It is heritable, and most forms are passed on as a dominant gene. A few types are serious, most generally not. Many cases go undiagnosed because you can live a completely normal life with EDS and never know you have it. Are either you or your husband extremely flexible?

I do have someone close with EDS. Please set up a gmail account if you want to have a conversation.

amother

Tue, Feb 26 2013, 10:48 am

I set up an account medicalinfoplease@gmail.com. Thanks for the feedback. My husband is flexible but from what I read online, I am scared. I read that kids/adults with this condition live in pain and I don't want that for my baby. She is six months old and is having difficulty using her hands effectively because she doesn't seem to bve able to bear weight on them. The just flop backwards. I always thought it was a joint issue which physical therapy can strengthen but doc feels otherwise..

Rubber Ducky

Tue, Feb 26 2013, 4:49 pm

Most cases really aren't that bad -- do get an evaluation.

Last edited by Rubber Ducky on Tue, Feb 26 2013, 4:51 pm; edited 2 times in total

amother

Tue, Feb 26 2013, 4:49 pm

You've got mail!

amother

Wed, Feb 27 2013, 1:23 pm

Thanks for email chizzuk-whoever responded. Our appointment is tomorrow. I pray that she will be ok.

amother

Wed, Feb 27 2013, 1:34 pm

This is a UK hypermobility forum which you may find helpful http://www.hypermobility.org/forum/index.php. Hypermobility and EDS have only more recently gained recognition and it seems that it's no longer as uncommon as was thought to be. Do you or your husband have 'bendy' joints? as EDS is definitely hereditary. I have recently been on a course about EDS and Hypermobility and have met a group of women with EDS. There are varying degrees and some are definitely doing better than others. Hopefully your DD will be okay.

Feel free to post any further questions though you may get more information from the link above.

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