Vascular Ehlers-Danlos Syndrome (VEDS) confirmation

Does anyone on here have Vascular Ehlers-Danlos Syndrome (VEDS)?

We have received confirmation via genetic testing that my husband carries the gene that predisposes him to VEDS.
He has no physical characteristics, no symptoms and no sickness relating VEDS however several family members have died suddenly from this which is why he had genetic testing done.

We received an overload of information at his Cardiologist appointment yesterday which included a multitude of tests, scans etc that he must have in the coming weeks as well as blood pressure meds to keep his blood pressure low.

The information regarding VEDS is scary and confronting. Even if all the tests and scans come back fine at the end of the day he still carries the gene so at any moment in his life his organs could rupture and he die. He is only 35 years old.

My husband is a keen weight lifter and has been told to cease weight lifting at least until all scans and test results are reviewed but even if they come back fine he may still need to alter his training schedule.

Our two children have also had genetic testing and thankfully do not carry the gene.

We were instructed not to Google the diagnosis however i already did this prior to our appointment. I'm scared for my husband, our little family and our future.

Does anyone have VEDS? Can you still live a physically active lifestyle? How do you cope with this diagnosis? What can i do to help my husband? What should WE do?

Any information would be greatly appreciated xx