Loeys-Dietz
I have experienced a rare disease involving my boyfriend. He has a genetic disorder called Loeys-Dietz and it is similar to Marfan's Syndrome. It is a connective tissue disease and causes many complications, especially cardiac issues. He has had 3 open-heart surgeries and 4 back surgeries. He also has an artificial aortic root valve. He has 2 titanium rods in his back to prevent extreme scoliosis in which his back turns into a zig zag and his organs get squished together. His tissues are very fragile and can have bleeding issues. He has had surgery on his eyes to fix dual detached retinas. He is allergic to so many medications, especially antibiotics. There is only one antibiotic he can take. He is on blood thinners and a few other medications. With everything that he has been through he still smiles and is always upbeat and positive. I wouldn't want to spend my life with anyone else. I love him so much!
Questions for You:
Have you heard of Loeys-Dietz?
What do you know about it?
Do you know anyone with the disease?
@blueClementine942 . Hugs to you and your boyfriend. Both of you are 
the the superheroes of Love and Support.
I have never heard of Loeys-Dietz hence I do not know anything about it. I hope someone will see your post and connect to you
@blueClementine942 I've heard of Marfan's syndrome before but my knowledge is pretty basic. Loeys-Dietz is totally new to me, thanks for providing information about it!
@blueClementine942
Hello there, how are you? How is your significant other?
Glad to hear you care for him so deeply 
I think that just a doctor can answer properly to specific questions, did you try to have things clarified maybe with the doctor that follows him? Because even with same conditions there are differences that are proper of individuals given we are not all the same also physically speaking.
I hope you can find here the emotional support you deserve and any feedback from someone experiencing the same in order to make you feel less alone.
Take care 
I didn't ask for medical advice. I didn't ask any questions about it at all. You said doctors can answer properly to specific questions. I didn't ask any.
@blueClementine942
Hello, sure I did not say you were asking for advice, I just thought that to the question '' What do you know about it?'' an expert could answer in a very precise way. So in the perspective of wanting to know about it, into details, I thought to discuss this option with you.
Sorry you felt like that by reading my reply that was meant to offer support as in, first of all, being heard.
Take care