APECED

In the original article I read, it said something about how the diagnosis for the condition was going to be changed in the future. Because it was so rare and had similarities to something else, they evidently decided it was easier to categorize them together. Specifically, it said the condition would be merged into autoimmune polyendocrinopathy candidiasis ecto- dermal dystrophy (APECED). I don't recall which type but it seems like it was 3 or 4. I've come to the conclusion what when the shit hits the fan, this is going to be the diagnosis they choose because to them it will seem like everything went wrong at the same time, when the truth is far different.

It is frustrating. Everything about this is frustrating. The system is frustrating. Individual doctors are frustrating. The continual changing and progression of the symptoms is frustrating. The system, as I've said before, is broken. It wasn't doing well, but COVID, baby boomer retirement, and caps on graduating physicians and residency slots have really broken the medical system. Physicians are so myopic. They need one thing. If you have more than one thing going on, they simply cannot handle it. If things aren't in a nice and obvious direct path from better to worse in a specific area, they are not prepared. PCP's have limited set of tools - basic tests and referrals. Specialists all expect all the symptoms to fall within their purview or else they just point the finger elsewhere. If you have something that is multi-system, you are not going to find someone willing to dig around and figure out what is going on. Meanwhile, referral times are through the roof and the largest influx of clinicians are generalists. Yes, we need those PA's, but putting them in urgent care centers means stuff is going to get missed. One of the most frustrating parts of the appointment is sitting down the nurse or nurse assistant and getting asked what is going on. For a knee or hemorrhoid or anything you can point at, that step is great. For me, it is just an impossible situation where I try to explain in as few words as possible something that even their physician is unlikely to understand with everything I can hand them.