4 Normal Echo's. Should I be concerned? Ehlers Danlos Syndrome.

[bflare]

I am a 40 year old male with a genetic condition called Classical Ehlers Danlos Syndrome. It effects the production of collagen throughout the body. It is the less severe type. The most severe is the Vascular type which can affect your internal organs. My main issues are with skin fragility & hypermobile joints. I have good blood pressure, I keep fit at the gym & my cholesterol / blood sugar are all good. I was clinically diagnosed around 11 years ago by a renowned Professor Bird. He sent me for my second echo & actually said that I didn't need another one as I was into adulthood with normal readings.

With the type i have there is a very small chance that the aortic root can become dilated but it tends to happen at an early age & rarely progresses as this report says ashg.org/2009meeting/abstra.... Because of this I have to have 5 yearly routine Echocardiograms. I have had 4 now & all have been normal. My last one was on Monday & although I have not had the results yet the technician said everything looked ok. Prior to this my Cardiologist cleared me for exercise without limitation & went as far as to say I didn't need another echo for 5 to 10 years so she wasn't concerned.

The thing that keeps worrying me is that my Grandmother who had the same condition as me passed away in her late 40's. Her death certificate records cause of death as an heart attack. My Fathers brother who didn't have the condition passed away in his late 50's from a heart attack. Although I think he had other heart issues going on too. But, I am led to believe he & my Grandmother were both heavy smokers with high blood pressure.

I keep getting anxious & panicking whether something may happen to me. I try not to think about it & concentrate on the normal Echo findings.

Should I be concerned? I would like just to get on with my life as normal but this is holding me back.

Any advice please?

[Dolphin14]

Sounds like they've monitored you quite closely.

You have to remember that science has improved outcomes over the years for many conditions. Family history is a huge part in our health of course, but treatments have improved over the years. Being aware of family history and taking care of yourself will contribute to your longevity. Keeping up with appointments and following guidelines is important.

Of course we all worry about our health.

Best of luck to you.