We have EDS in our family & I have been clinically diagnosed with cEDS due to all the major criteria. I have extremely stretchy skin, atrophic scaring & joint hypermobility in all small & large joints. One that has always worried me is the death of my Grandmother in her late 40’s which was said to be a heart attack. I was speaking to my aunty last year & she said she has had a genetic test for ‘the type of EDS that kills you early’. I am assuming she meant vEDS? She said it came back as ‘inconclusive’. At the time I wasn’t sure what inconclusive meant, so I didn’t give it a second though. I have recently become very anxious due to my routine Echocardiogram & my Father who is 61 first Echo which he had last week. After researching the term ‘inconclusive’ I am now extremely worried as it looks like it means that my Aunty has a variant of the COL3A1 gene & in fact could have vEDS even though we show more signs of the classical type.

Could someone comment on my fears?