Hi everyone, l have just been confirmed with Vascular Elhers Danlos syndrome and I'm seeing my genetics consultant for the first time on Wednesday. As l am all new to this, l wonder if anyone could advice me on relevant questions to ask regarding future care. Thanks
Genetics Consultant : Hi everyone, l... - The Ehlers-Danlos...
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Ask them to refer you for & request ongoing, regular cardiovascular tests such as heart Echo, ECG, etc.
I'd also advise you, based on my experience, to learn as much as you can about your condition & be aware of your own body.
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