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Margot

885d

Does anyone have hEDS and also vascular EDS? How did you know you had the vascular form before you were diagnosed?

Top reply
    • Chickpea

      884d

      Are you asking if you can have both subtypes simultaneously? As far as I understand, you would only have one subtype. If you are originally clinically diagnosed hEDS, but then learn you have the genetic marker for vEDS, then that would be your actual subtype and would override your hEDS diagnosis.

    • Chickpea

      884d

      Are you asking if you can have both subtypes simultaneously? As far as I understand, you would only have one subtype. If you are originally clinically diagnosed hEDS, but then learn you have the genetic marker for vEDS, then that would be your actual subtype and would override your hEDS diagnosis.

    • Aspie3

      884d

      I have HEDS and POTS. Now that we have the pots fairly under control, I know I have a right bundle branch block, so I have a cardiologist… But it’s mostly for precaution. Thankfully I don’t have the vascular issues as much.

    • Messymexi

      884d

      The genetic test I did covered pretty much everything I believe 🤔 I did not have the genetic markers for vEDS and my echos always come back normal. It's just kinda like a precaution thing, hope that helps!

    • UnluckyUnicorn

      884d

      Similar to the person above, I have hEDS and POTS. My echo came back normal so I didn’t do genetic testing for vEDS. I do wear a holter when needed and have a cardiologist

    • Margot

      884d

      Thank you, that helps. I also have pots and had an echocardiogram and am waiting to get the results for the vEDS, but I don’t see a cardiologist. Did you ever get the genetic test for vEDS and do your echocardiograms come back normal?

    • Messymexi

      884d

      I do not have vEDS but when I was diagnosed with HEDs, the genetic doctor told me to see a cardiologist just in case. Especially since my POTS keeps my heart rate very high and blood pressure low. So my cardiologist manages my POTS and monitors my heart for any changes. I get a echo done once a year (ultrasound of heart) and sometimes wear a holter monitor if my symptoms get really bad and we need to monitor closely

☝ 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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