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Ehlers-Danlos Syndrome User Group
Possible Ehlers-Danlos?
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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Possible Ehlers-Danlos?

I know Ehlers-Danlos is genetic, but is it possible to have hyper-mobility type without family history of it? Most of my family members on my Dad's side have benign joint hyper-mobility syndrome, but mine's always been a lot more severe and I've had a lot of pain and subluxes which never happened with any of my family members(as far as I know.) so I'm wondering if it might be Ehlers-Danlos, as I have other symptoms too.
Tags: EDS, ehlers-danlos, hyper-reflexiability, joints, Pain, flexibility, skin allergieses
4 Comments
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620923_tn?1405964489

  Hi and welcome to the EDS group.

Yes, it is highly possible that u have more symptoms and issues then others in ur family....not all with it have the same issues.

I never realized how flexible I was until I was dx with EDS at age 48....my sister's always seemed to be very flexible, I never attempted to move like that as the thought of doing it hurt...lol....I know it is possible to have this condition and not know it or be aware...so, do get seen by a good rheumatoid Dr that knows EDS.

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1448748_tn?1312959808
I wanted to add that I was doing some research, and although very rare, eds, at least the vascular type has been known to spontaneously mutate and have no genetic relatives that had the disease.  I read a study on a 15 year old boy who had this..

I may be wrong on this, but I think you can carry the mutated gene but not actually have EDS, so its very possible that nobody in your family has it or has symptoms and you can still have it.
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620923_tn?1405964489

  Thanks for that bit of info, I was not aware of that...good to know.Something to look into further when we get to see the geneticist, I am sure they can answer this question.

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1903798_tn?1333908888
Also often since its rare people don't know...my mom has it and did not realize until my diagnosis.  Both of my daughters have it as well.
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