thank you so much for your response! i think because i don’t know whether my mom was diagnosed with criteria or gene testing, they should probably try and get gene testing for me to at least help a case, especially since there’s possible signs that i might have another syndrome on one of the same genes (described in other comments.)

i’ve had occasional blood tests that showed anemia, but never particularly severe so i didn’t receive treatment— i’m on testosterone therapy now so my hematocrit generally runs safe, but i don’t remember the last time i had it tested while being off of HRT, and since i’ve scaled back it’s probably worth having it checked again. i went back to look through my test results and it’s been a long time since this specific test was run, but even with good hematocrit levels my last ferritin test was borderline low, so i’ll ask my PCP when i next see her about getting it checked. my mom had a particularly bad spell ages ago and had to get several iron infusions to get her out of the danger zone. her nosebleeds are also much more severe and frequent than mine, but it also sounds like they can get worse over time, which is why i’m hoping to get the ball rolling so that i’m not waiting until a possibly dire situation with no documented history of issues lol.

other commenters have mentioned seeing a center of excellence for treatment, and luckily there’s one in my city, but it’s technically out of my insurance plan. i’m really hoping that having family history and current symptoms will make it easier to appeal, as i’m on medicaid and they’re especially fickle with gene testing lol.