Spud

214d

Hi! What subtype of EDS do you have?

Propranolol

Ehlers-Danlos Syndrome (EDS)

Edema & Anasarca

Essential Hypertension

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  • MJ17

    214d

    Severe hypermobile with POTS

  • Spud

    214d

    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

  • madd94

    214d

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

  • randochikn

    214d

    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

      214d

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

  • InkyStar

    212d

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

  • Collagent

    212d

    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

  • InconclusiveResults

    208d

    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

      207d

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

  • MakMcK

    208d

    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

  • ArtyCharlie

    208d

    Type 1 ❤️ with chiari and heart issues

  • Emily2

    208d

    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.

  • Little_Mo

    206d

    Classic like

  • kayladannii

    205d

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

☝ 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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