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Emmylane

804d

Hey! I’m Emmylane, and recently got my diagnosis. I’m wondering how to go about getting diagnosed with a specific type of EDS: I’m worried mine is vascular.

Top reply
    • wise

      802d

      a geneticist is the only way to definitively diagnose a specific subtype of EDS but like. good look getting in to see one lol. I've been on a wait-list for three and half years because there's only one guy in a 100 mile radius and I keep losing insurance

    • wise

      802d

      a geneticist is the only way to definitively diagnose a specific subtype of EDS but like. good look getting in to see one lol. I've been on a wait-list for three and half years because there's only one guy in a 100 mile radius and I keep losing insurance

    • abb311

      802d

      I would definitely look into a geneticist! I have vEDS. It was made official by my genetics test but I was HIGHLY suspected beforehand due to physical symptoms. Especially the translucent skin.

    • Cory1988

      803d

      Mine is vascular and identified through a physical examination, my insurance will not pay for any gene testings. But vascular isn't that bad, just follow up with a heart doctor regularly. Because you may have symptoms that feel like an actual heart attack, lots of chest pain and you want to make sure of what it is and taking the right medication may help manage those symptoms.

    • MaggieQuinn

      804d

      You absolutely need to find a geneticist near you, I was diagnosed through what’s called NGS (Next-generation sequencing) it’s essentially just a more time and cost effective way of sequencing genes. I️ do know someone who’s NGS test found no mutations (it’s also possible for the mutation to be on a recessive gene and missed) but they had the symptoms, if that happens and they try and dismiss you ask them to do a CNV (copy number variant.) It’s done on the same sample taken, it’s just a more in-depth way of identifying gene mutations. Generally with type III it’s diagnosed through a physical examination alone, but it’s always a good idea to be sure, especially if you have some of the more severe symptoms.

    • thistle

      804d

      Look into going to a genetics doctor that works with people with EDS. You might need to do a decent night of research and call around

☝ 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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