If you live in the US and plan on staying alive in the long run, then you better spend a lot of time consulting HealthData.org--and analyzing the data there--to fit your particular situation.

The third leading cause of death--or at least what is believed to be the third leading cause of death--is preventable medical errors: https://www.npr.org/sections/health-shots/2016/05/03/4766361...

Let's not even get in to how much health care actually costs in the US. But, if you want a completely solid read on that matter, get the book CASINO HEALTHCARE via Amazon. You will not be disappointed.

That being said, both me and my fraternal twin brother turned 30 a month ago. Unlike for most people, turning 30, together with my brother, was a very special milestone that I never expected to reach in life.

I have 2 rare autoimmune neurological diseases, that affect my peripheral nervous system (with one of them being very rare, with only case reports and cohorts published in the medical literature...and it was discovered relatively recently in the medical world...in the past 20 years via NIH research grants to physician-scientists) plus type 1 diabetes. It is all connected, but that is another story for another time.

The US health care system is unequipped to properly deal with people who have rare diseases. 6-7% of the general population has a rare disease, so having one, diagnosed or not, is actually common, and is even more common than the prevalence of ADHD in adults! This too is another story for another time, but I ended up self diagnosing the very rare one correctly, even though in my case the whole situation is beyond confounding, even compared to others with the same very rare condition that I have.

The issue is that for people with rare disease, the situation can be desperate, dismal, and even hopeless. In the case of rare disease, the social support structures in place within a society are literally just as important as the medical aspects of care.

We really do need highly specific plans and approaches for, rare diseases in general, for dealing with our unique situations. Compared the the United States, the European Union excels at this, and is the only world superpower that has a practical, pragmatic, and winning approach on the matter. For access to orphan drugs, Germany is the clear winner worldwide. For societal supports, Norway (which is not part of the EU but it is kind of part of the EU for the purposes here) is phenomenal and no other country compares, worldwide. Their government has extremely well developed programs, offices, and "medical homes" (go to contacts that are teams that coordinate all care) for rare disease patients, and for them only.

Remember, our situations are unique and different compared to other more common chronic illnesses, whether you want to believe this or not.

In fact, probably the biggest threat to my well being as somebody with rare disease: a government that does not reform, regulation wise, with the rapidly changing pace of technology. (And yes, all technology in general needs to be regulated, to varying degrees, whether you want to agree or not.)

Sorry to go off on a tangent. If I told the whole story, which would take quite awhile, you would be shocked, amazed, stunned, and impressed, all at the same time. I have cheated death many times, and I really shouldn't be alive. Both my doctors and I very much are aware of that. I certainly do not know why I am here, however I have purpose and I have meaning in my life.

I would love to go into more specifics, but I cannot without effectively writing a novel here.

The point is, on my 30th birthday, I came to the realization that I basically have to go to the EU (I am a dual US|EU citizen) to not only stay alive in the long term, but to potentially avoid having to suffer profoundly for the rest of my life. I cannot go in to the specifics here, though. But, trust me, the US health care system is not equipped to deal with rare disease properly, at all.

So, instead of celebrating the remarkable accomplishment of my 30th birthday with my best friend (I really shouldn't be alive), I was realizing that I had to leave the US for good, to stay alive. I cannot go in to specifics here, but this is not an exaggeration at all. It was profoundly sad for me, because I have to leave my family, who mostly live int he US, and basically start a new life.