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Hi, i have just joined after seeing the great videos on utube…I have diagnosed EDS4. I have had all gene tests, and im offically in the gang..im 51, & only got tested because my younger sister got ill, & yes she has it as well. We are seen by Prof Pope in London,& although we both have several anyuersyms, we are monitored and have CT scans every year.
My major problem is a ascending aortic anuerysm, but at the moment its ok..There is not much EDS4 info in UK, i think there are less than 40 people with it here. I will do the check list thingy , & get it to you. Thanks for the interesting videos, & info…Bye for now.
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