40 Year old male with clinically diagnosed with Classical Ehlers Danlos Syndrome in 2004. The syndrome runs in my family. My Dad, aunt, son & grandmother all have it. My Dad is 61 & healthy apart from hip issues. My Aunt is mid 50’s & healthy apart from the usual EDS issues. My son is 12 & healthy. My grandmother died at 45 & I am told it was a heart attack in the 1970’s. My Uncle who I didn’t know & who I am told didn’t have EDS died 5 years ago in his mid 50’s. The cause of death was Left Pulmonary Thrombosis.
I am physically fit with normal blood pressure. I go to the gym 4 nights per week & am reasonably fit. I stopped smoking 5 years ago & no longer drink any alcohol. I have had 3 Echocardiograms the last almost 5 years ago & all normal with regards to mitral valve & aorta. Although, I had a very mild mitral regurgitation which I am told was almost insignificant. My last cardiology report said that it may be beneficial to have a further Echo in 5 to 10 years time.
Recently after reading something online about aortic aneurysm I have become extremely anxious. I know my condition can affect the aorta but all the research that I have looked at tends to point towards it not been anything to worry about if several normal Echo’s have been recorded. But I cannot be sure that my Grandmother & Uncle didn’t die from an aneurysm.
Should I be worried taking into consideration all my Echo’s over the last 30 years have been normal?