My dad was lucky to get a drug for his lungs he has an uncommon deadly disease called IPF (and also COPD). It was a combination of doctor, insurance and drug company but in the end he was approved and was given the drug. People networking is as important in health as IT it's who you know.
I know I was "researching" (Internet, I'm not a doctor) everything you get desperate when you hear your family member only has a few years. You even consider alternative mumbo jumbo think well maybe it may work.
Studies and trials are rare in my small town and region but if you can I'd search, ask, impose, network do whatever it takes have no shame!
You didn't mention if your uncle was still living if so I wish you and your uncle good luck and good health.
Well, I wasn't clear above, but sadly nature reclaimed my uncle, he's now ashes. I thank you very very much for asking and wish you the best of luck. It's a very weird and sensitive subject.
About your comment:
1) indeed networking is massively important. You talk to someone out of the blue, it's hard; you say you've been directed by <acquaintance> and the discussion is now relaxed and open.
2) indeed, you have to forget about shame. Just insist politely. It's hard at first but with time it goes.
3) I feared becoming too emotional and trusting things that would reinforce my belief. So I stuck on the usual venues: pubmed, nih, nci, etc etc. And even then, every topic or paper, I would check citation, publication date, previous or more recent validation/invalidation. Research lacks counter studies and sample so one academic paper is not enough.
After this screening, I then pinged various people about these findings and what they thought about it, to again, not pursue my own dreams. The issue is, 10 doctors ~= 10 point of views.
3) clinical studies were barely starting in my uncle case (one doctor told me about israel), he was against this because he thought he would be a guinea pig suffering for their profit. Which isn't false but we could have delayed death a bit. We all felt it was way too quick.
ps: all of this just gives hint about the complexity of the real world. So many pieces working at the same time, politics, economy, research, companies, doctors, networks .. nothing fits perfectly, and if you have to turns the gears on your own it takes deep faith to never stop. I wish I did more, but since it's the first time, I couldn't know if I was crazy and foolish or if I should harass doctors a bit more. My opinion is now clear: never stop; be sensitive, but never stop. (that's also the quality of a leader.. which is as old as important in human groups)
I know I was "researching" (Internet, I'm not a doctor) everything you get desperate when you hear your family member only has a few years. You even consider alternative mumbo jumbo think well maybe it may work.
Studies and trials are rare in my small town and region but if you can I'd search, ask, impose, network do whatever it takes have no shame!
You didn't mention if your uncle was still living if so I wish you and your uncle good luck and good health.