I really appreciate your thoughtful post. You really captured the situation well, and you were spot on in all regards. I totally agree with you! Also, thank you for the kind regards!

Sad but true: I do expect at least 33% of my medical data being leaked via security breaches, and a lot of it is extremely sensitive information.

Yeah, relying on junior doctors is a serious and insurmountable problem when you need actionable results and accurate diagnoses. I also have type 1 diabetes (autoimmune and insulin-dependent) and my endocrinologist (who is phenomenal yet only has a masters degree and is a nurse practitioner...) has always had my back, getting me out of some really bad situations, and has always referred me to the most amazing and reliable specialists. The thing is, all you really need is a link like that in an highly regarded academic medical center to get you to exceptional doctors. This is a strange thing to say, but she has been at this hospital for several years, and as a nurse practitioner, has climbed the hierarchical ranks of the healthcare institution, earning respect from her colleagues, so she has connections like these. I also have always had the impression that she gets a lot of enjoyment out of throwing her weight around at the hospital.

Yeah, I know what you mean about how the fox watches the henhouse. I receive a blood product, that literally costs over $300,000/year, at the contracted rate that insurance pays out, and I am forced to get it through a specialty pharmacy that is a subsidiary of UHC. It is extremely temperature sensitive, and it has been shipped to me hot, and I was told it was "OK". About 1/3 shipments, they leave out critical supplies that I need, too. There is a total disregard and/or sense of responsibility towards the situation, overall. It is beyond appalling. Plus, I have tried about 10 different treatments and/or medications, including in combinations, and this particular medication and route of administration, is literally the only thing that has ever worked, after over 6 years of trying with profound suffering, let alone has put and kept in in pharmaceutical remission. So, a lot is really on the line here.

Yeah, when I go to see my doctors, I do get the impression from them, out of amusement, amazement, and concern, "How on earth is she even alive?". Anyways, I have cheated death more than a few times.

Actually, the very rare autoimmune disease that I have was first diagnosed as "diabetes complications" in the form of "diabetic autonomic neuropathy" starting at age 18, even though it really started prior to the type 1 diabetes (T1D) diagnosis at age 5.

At age 18, it was diagnosed as a severe digestive disorder that causes chronic nausea and vomiting. Before that, I had been to several doctors, at least 10 in 6 months, including some very incompetent GI doctors. The nurse practitioner endocrinologist diagnosed it and put the bad situation to an end. Long story short, but I basically have a form of autoimmune autonomic nervous system failure that is pervasive, and affects bodily functions in general. Basically, my body cannot regulate its own bodily functions due to the antibodies I have, and it used to be very severe.

Long story short, this is never supposed to happen, and it never added up. But, I didn't know what to do with it, so I accepted it. Due to the severity of the autonomic neuropathy and the progressive nature of diabetes complications (and the lack of any sort of remedial treatment whatsoever for this particular diabetes complication), I accepted that I was going to die from my diabetes, at a young age, when I was 18 years old. I never had any prior warning signs (like terrible care or management) that would have signaled even something remotely of this severity to occur. So, I felt extremely jaded.

I am an electrical engineering student (senior, undergraduate), who is finally finishing up her degree, at age 30. Literally 10 days before I was diagnosed with the very rare disease (my blood had been sent off to the one lab in the US that did the antibody testing at that point) I actually had to decline a 6 month internship offer with Intel in Folsom, California, in mixed signal processing at their research and development campus. I was absolutely floored and honored, but I was in no position to take up the offer. I was very sick and I could not have worked, even if I wanted to.

Anyways, my training and education in electrical engineering, probably made the difference of the world, in my profoundly bad situation. I always wondered, even at age 18, if the autonomic neuropathy was actually due to my T1D in the first place. I would scavenge through peer-reviewed journal articles during the very little free time I had (I was studying engineering full time, plus working part time 15-20 hours a week, plus juggling around severe physical health problems that we all underestimated to an extreme). I literally did this for years. I certainly did not understand all of the articles conceptually, but due to being trained as an applied scientist, I could eliminate what was theoretically possible--and what wasn't.

At age 22, I was finally diagnosed with severe orthostatic hypotension (low blood pressure when standing up), that would get more and more severe every month I went to the cardiologist. My cardiologist is a great doctor, and is in charge of all of her colleagues in cardiology at a prominent academic medical center. My resting heart rate in general was around 130+ beats per minute whenever I was there, in addition to not being able to stand up without nearly passing out, every single time, at minimum.

You would hope that a cardiologist would not be hesitant to make bold or risky moves, or be intimidated by a particularly bad situation. However, because my heart rate was so high and there were very few appropriate medications available at the time to treat the heart conditions I have, I was prescribed a beta blocker.

Everything at the time had very much been going downhill, but this put it on the superhighway. I literally ended up being hospitalized for severe orthostatic hypotension every 1.5-2 weeks over 4 months, at like 2-3 days at a time. All they could do for me was pump me full of fluids and discharge me, only for it to happen again.

Anyways, I ended up coming across the name for what I had via Googling on my phone in the ER. My endocrinologist tested me for it, and I had it, and the rest is history.

My cardiologist said, looking back, that I had the worst orthostatic hypotension that she had ever seen in a diabetic. I was only 22 at the time. She came to the realization that it was a red flag.

But, engineering school has helped me come up with creative solutions to my health problems in general. Plus, I understand the scientific process in general well too, so it helps me make better and more informed decisions.

I was tested for a disease that I should have never had. It had an insidious onset and it looked just like diabetes related autonomic neuropathy. We believe that this disease caused the autoimmunity that led to me developing T1D too. We also have a hypothesis on how my autoimmune diseases are linked. There is no way that there are not others out there like me, which bothers me tremendously.

What if I never received proper diabetes education? What if I never pursued engineering? What if I was poor?...etc., etc. The fact is that this would have never been figured out, and this disease has only been discovered relatively recently in the history of medicine, too, under NIH grant funds.

I turned 30 a month ago, and celebrated my birthday with my fraternal twin brother, my best friend. I have been in pharmaceutical remission for nearly a year now (I basically have to take this medication for life, to hopefully stay in remission). It really was a milestone for me. I know I have cheated death more than a few times, and that I really should not be alive. I truly was never expecting to turn 30, ever.