I Have A Connective Tissue Disorder Call Vascular Ehlers-danlos Syndrome.

I have a connective tissue disorder call vascular ehlers-danlos syndrome. Where do I find a doctor that understands the nature of this syndrome and how as a result all of my internal organs are very fragile and falling apart. I'm only 42 I've lost five of my organs I've had the same symptoms as the previous organs in my right kidney for almost 5 years now. I am certain that the same thing that happened to the other organs is happening to my kidney. I found out that my great-grandmother died from her kidney rupturing and a pond examination during her autopsy she was diagnosed with something called Alports Syndrome. That is also a connective tissue disease and seeing how all of its genetic I finally have the answer to where in my history I know where this came from. But trying to find any doctor that understands this at all and the severity of my situation because I also have an immune disease called primary immune deficiency or severe combined immune deficiency. My basic infections get into my bloodstream and turn me septic very easily and it's been happening since I was an infant. My last bout of septicaemia was just seven months ago and I almost didn't make it out of ICU I was told that my heart did not want to keep working butt they saved me and that it is very likely my next round of septicemia will cause total heart failure and I won't survive. I don't know what to do to help myself, and the doctors I ask for help dismiss me or accuse me of being seriously mentally ill. All I want is to live.
Can someone please help me?