ne999

Don’t leave it passively to the doctors. Most doctors are clueless. Specifically request to be tested genetically and clinically. It’s potentially a life threatening condition if it’s not treated. When looked after you can have a near normal life expectancy.

I have Marfan but have the opposite chest problem where mine sticks out.

Read up about WW2. Things were much worse then. Aside from millions of people nit being killed in a war like the, we have decent law and order, better healthcare, access to information, vastly improved education, etc. etc.

Don't let narrow-minded fearful people get you down. It's a great time to be alive.

I have Marfan so we’re basically cousins..

I’m 44 now and have had a spinal fusion, aortic valve/ascending aortic replacement, retinal detachment, etc.

Yes, being sick:chronically ill sucks but I don’t let it define me. I found a wonderful wife and we make each other happy. I got into computers at a young age and made a great career out of it. I work with some really awesome people and I enjoy what I do.

When I was your age I didn’t think any of that was possible. I’m here to tell you that it is - you can have a happy and productive life. Things will get better. Illnesses and health problems will come and go - and each of them will make you a bit more resilient and mentally tougher.

Good luck and take care of yourself!

Are you getting the right care for your heart? Does your version of EDS have heart issues?

I had my aortic valve replaced with a mechanical valve 20+ years ago. Also my ascending aorta due to the aneurysm. In my case this was due to Marfan Syndrome. Like others have said, your sternum will be sore fir a while. In the short term, if you need to cough hugging a pillow helps.

Have been you checked for Marfan or related disorders?

I have Marfan's Syndrome and am taking Losartan based on some ongoing studies that it may help. I read that it may help Muscular Dystrophy as well. Have you heard of this?