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Spud

750d

Hi! What subtype of EDS do you have?

Top reply
    • kayladannii

      741d

      hEDS. i had genetic testing done & it said “variant of unknown significance” for the ADAMTS2 gene that is associated with the dermatosparaxis type.

    • kayladannii

      741d

      hEDS. i had genetic testing done & it said “variant of unknown significance” for the ADAMTS2 gene that is associated with the dermatosparaxis type.

    • Little_Mo

      742d

      Classic like

    • Emily2

      744d

      hEDS for me, my rheumatologist said you can’t have multiple kinds, which I don’t believe. Though it’s difficult to know which doctor is right when every single one has different “facts” about it. I was told I couldn’t get diagnosed without seeing a geneticist to rule out other forms of EDS. All I know for certain is that I’m hypermobile.

    • ArtyCharlie

      745d

      Type 1 ❤️ with chiari and heart issues

    • MakMcK

      745d

      Waiting on my testing to find out! I have hyper mobility and skin issues like thin and translucent skin with easy bruising. I wonder about Classical-like type

    • InconclusiveResults

      745d

      I'm diagnosed with hEDS, but gene results had "variants of unknown significance" for KEDS and BCS. It makes me wonder what science will say about these things years down the road!! 🤔

      • randochikn

        743d

        @InconclusiveResults Same here!! I had two variants of unknown significance and I so hope that soon they will know what that means exactly!!

    • Collagent

      749d

      My doctors are mostly on the fence about whether I have hypermobile or vascular. My symptoms aren't clearly one or the other, and I had a brain aneurysm when I was 19. They pretty much just tell me to "not worry about which subtype it is because the treatment is the same." Which while I understand, it's still frustrating

    • InkyStar

      749d

      I have confirmed cEDS (COL5A1) and my geneticist thinks I might have hEDS too. 🥲

    • randochikn

      750d

      well they said hypermobile, took a genetic test and had two variants of “unknown significance”, these two being spondylodysplastic and vascular type. They dont seem worried, but my mom has a grandmother who had vascular dementia and mini strokes so i am cautious about it knowing that it’s possible i am at risk.

      • randochikn

        750d

        @randochikn Never had a major “episode” so basically its unlikely i have sever issues vascularly

    • madd94

      750d

      Waiting on my genetics results, but almost certainly hypermobile type! Also with dysautonomia, though still working with a cardiologist to figure out a diagnosis.

    • Spud

      750d

      I'm hypermobile type too! And I'm not sure if I have POTS bc I have not yet taken a tilt table test, but I'm on propranolol and it really helps haha

    • Student_girl

      750d

      Severe hypermobile with POTS

☝ 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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