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hello.its.me

110d

After suspecting hEDS, my doctor is referring me for genetic testing in London to rule out any other types of EDS. Other than hEDS, my symptoms only match cEDS or clEDS , but no one in my family has EDS, so how likely is it I will have those types? I'm still not sure how the genetics work.

    • goblin49

      110d

      First, I wouldn't necessarily assume no one in your family has eds, they just might not know it. It is unlikely to have a random mutation come up in just you, but it is a possibility! Secondly, heds is the most common of all types of eds, so from a general population standpoint you are much more likely to have that instead of one of the other two. However, heds still does not have an identifiable gene that causes it, so genetic testing can only be used to see if you have a more rare form of eds. Hope it all goes well and you can get some answers!

      • hello.its.me

        110d

        @goblin49 now that I think about it, my mother has a few symptoms that could be linked to eds, but I have no way of contacting her to ask. I've also heard alot of people saying heds is only the most common bc it's the one doctors diagnose you with when the don't want to send you for tests. Do you reckon this is true?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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The context provided does not contain specific information about the likelihood of having cEDS or clEDS if no one in your family has EDS, or details on how the genetics of EDS work.

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