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Pistol

Anyone with EDS and POTS

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Hi - I have POTS and my husband has symptoms of joint-hypermobility. My 13 year old daughter has been displaying symptoms of POTS as of late and she also shares all of the hypermobility signs of my husband ( she can bend herself in half and has many abnormal joint issues ). I am hoping to save her from developing full-blown POTS ( I am disabled from it so she is very scared of getting it too ). I would like to have her checked for EDS but do not know what doctor to ask, so here is my question: what type of doctor diagnoses EDS? I would like to go that route before I send her to a cardiologist or autonomic specialist because of her fear of getting POTS. I really would appreciate any Input and thank you in advance. 

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I saw Dr. Alan Spanos in Chapel Hill, NC.  He was excellent.  In the end I wasn't diagnosed with EDS, but with features of Hyper-mobility.   He did a really thorough evaluation and explained things very well.  I've heard of other EDS specialists as well.  I think the online support group "Inspire" is dedicated to EDS and you can find a lot of information there as well.  

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@Christy_D - thank you, I thought it might be a geneticist but wasn't sure. Do they take a blood sample to confirm the diagnosis? 

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Pistol - There are blood tests for most forms of EDS, but not for Type III, the Hypermobility type, which a lot of people with POTS have.  I do think it's important to be diagnosed properly.  I was actually misdiagnosed for 1 year.  I was told I had it.  However, when I saw the specialist, he confirmed that I definitely didn't.  It was really important, because he actually diagnosed the root cause of my back pain and I finally got treatment!  

There are different types of subsets of the Hypermobility type as well.  It's an interesting field and more information is still emerging.  I read a lot about it when I thought I had it.. you can also have Joint Hypermobility without having Hypermobile-EDS.

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