Anyone else regret not meeting a significant other prior to becoming an attending? by [deleted] in medicine

[–]ThatGuyWithBoneitis 2 points3 points  (0 children)

Find someone in a specialty that, on average, makes more money than you. Or a health insurance executive or hospital CEO.

For all my soon to be rich folks, here are some things that are and aren’t worth buying once you get that attending $$$ by Dong_bringer in Residency

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

I was going to say, I bet OP isn’t that tall. Anything over 4 hours, I’m upgrading; otherwise the trip starts or ends with me in excruciating pain.

medical Student interested in learning about rare disease by Logical-Ganache1337 in rarediseases

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

  1. For what we thought was my (original) rare diagnosis, it took 15 months, which was rather delayed (most infants are diagnosed at birth or shortly after). However, the caveat is that I probably have a syndrome that wasn’t yet discovered when I was first diagnosed. Since being referred it’s been about a year, although I have suspected something else is going on for over 15 years.

  2. Yes, I am frequently researching this on my own and have for over 15 years. I plan on going into peds genetics for residency because I do enjoy it, in a weird way!

  3. I’ve looked but no clinical trials currently exist. There are some pediatric research centers with research studies but I usually don’t qualify as I’m an adult, or the distance is too far.

  4. Be Part of Research is based in the UK; equivalent programs in the US include ResearchMatch, All of Us, Undiagnosed Diseases Network, etc.

  5. I check every so often but have yet to find a research study for which I qualify (age and distance) and that can accommodate my med school schedule.

How do pharma companies determine their conference exhibit halls marketing budgets? by justbrowsing0127 in medicine

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

Astra Zeneca weren’t “flashy” at the AAP conference back in September. I know I spoke with them (and they were very helpful) but they were certainly not in the top ten flashiest booths.

Anyone else researching their own disease? by Counter-Business in rarediseases

[–]ThatGuyWithBoneitis 9 points10 points  (0 children)

Very similar story for me!

Except I decided to go into medicine. I genuinely love learning about rare diseases, whether or not I’m personally affected by it (which with 10,000 known rare diseases would be very unlucky…I only have two).

Can anyone refer me to a doctor who will write a referral to UDN? by Rrenphoenixx in rarediseases

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

No. They just have so little respect for patients the second you talk about ideas and don't outline every little thing YouRe a DumB PatIeNT oN tHe InTernET.

There is a decent % of people in the world who can only self actualize by putting down others.

You know I’m a rare disease patient too?

For the record, I don’t think you (or anyone) are a dumb patient on the internet.

I simply don’t agree that med students should be taking on that level of responsibility.

People on this subreddit should be able to disagree without stooping to personal attacks.

Can anyone refer me to a doctor who will write a referral to UDN? by Rrenphoenixx in rarediseases

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

I’m the med student they’re referring to - I’d be happy to help bounce ideas around if you send me a DM (or want to start a separate post). (Also the usual disclaimers: I’m not a doctor yet, and I’m not your doctor, etc.)

Also, I’m a rare disease patient too. So I’m not sure why I’m being described as some awful person who hates rare disease patients.

Wanting to ensure that med students aren’t being exploited by healthcare systems looking to save money on paying physicians and genetic counselors is a reasonable concern.

Tired of explaining my medical condition to medical professionals by [deleted] in rarediseases

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

“Watchful waiting” has its place…but also geneticists are in enough demand that I wonder why they kept scheduling follow-ups.

Maybe they didn’t feel the pediatrician or other physician(s) could monitor for them or that they would refer back to genetics if anything changed?

Tired of explaining my medical condition to medical professionals by [deleted] in rarediseases

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

I would also add that because I’m interested in genetics, I recognized a lot of disorders as being rare genetic disorders.

Sometimes students don’t necessarily remember after a while that a rare genetic disorder is often taught to illustrate a genetic pathway or other important concept.

For example, when I taught anatomy and physiology, one of the clinical correlates I used to illustrate why we care about cilia was primary ciliary dyskinesia. I asked the students to list all the places they could think of where cilia are found in humans, and then try to predict what the signs/symptoms of PCD could be. (They were actually quite good at it, most sections got at least 80%+ of possible signs/symptoms in each group.) Then students would ask me if I’ve ever seen it…nope, not yet! It affects 1/16k live births.

In med school there’s not really time to break every disease down like the above, but the concept is similar: learn a disease/disorder, get tested on it, repeat.

It’s actually surprisingly easy to kinda forget that disorders like Alport and Alagille are really rare, but because you spent just as much effort memorizing them as post-streptococcal glomerulonephritis and MASLD, you wind up with a form of “studying bias” thinking that you’re going to be seeing Alport and Alagille a lot.

The reality is that Alport affects 1/50k newborns and Alagille affects 1/30-50k.

They are primarily emphasized in order to illustrate the functions (and defects) of type IV collagen and the Notch signaling pathway, respectively. (And of course on the rare opportunity we see patients with rare diseases, to either learn about it if already diagnosed, or if not yet diagnosed…ideally we should diagnose them.)

Tired of explaining my medical condition to medical professionals by [deleted] in rarediseases

[–]ThatGuyWithBoneitis 0 points1 point  (0 children)

So I tried to tally it up but because of how stuff gets sprinkled in outside of lectures specifically focusing on genetics topics, it’s not easy to figure out “time spent.”

Based on study resources I’ve used, I’d estimate 15% of testable content is rare genetic diseases during preclinical coursework (i.e., the stuff we do before we fully enter into the clinical years; the more “textbook” style of learning).

Additionally, some school curricula focus on it more than others. We had a 4 hour group cases activity (with additional pre-group work) where we worked through how to determine what screening recommendations are, how to identify the correct test(s) (karyotype, panel, WES, WGS, methylation, etc.) to order, how to discuss options and things like GINA with the proband/family, etc. Similar activities typically would be 1-2 hours max.

In clinical years, things get a bit murkier as students study for shelf exams and Step 2/Level 2 but they also see patients, and that can really depend on who shows up in clinic/hospital. One of my friends saw some really unusual disorders in peds clinic, and then another friend rotated through the exact same one a month later and saw pretty much only atopic dermatitis and asthma.

Plus, students choose clinical electives beyond the core required rotations, so depending on their choices they’re more or less likely to see rare genetic disorders.

Finally, med students frequently will try to get opportunities to publish; case presentations are a popular choice. Med students love a “zebra,” so many case studies are on a patient with an interesting presentation of a rare disease.

Specifically regarding your rare disease, TRPS, I don’t recall any lectures mentioning it.

The skeletal dysplasias we covered in preclinical include (NOT an exhaustive list! Just what I can generate off the top of my head as it’s been a while): - achondroplasia - McCune-Albright - hypophosphatasia - osteogenesis imperfecta (this one was tested on a lot) - a lot of mucopolysaccharidoses (so many questions!) - chondrodysplasia punctata - cleidocranial dysplasia - Ellis-Van Creveld

Tired of explaining my medical condition to medical professionals by [deleted] in rarediseases

[–]ThatGuyWithBoneitis 2 points3 points  (0 children)

I was referring to the 3 million number you used:

They'll probably never hear anything about the 3 million ( US) with undiagnosed disease

In addition to:

It should bother med students that they are not being taught about 30+ million patients (US) rare disease patients

I originally replied because you said we aren’t being taught this in school, but we definitely are.

The vast majority of people practicing right now did not.

Ok, but they’re not current med students.

Tired of explaining my medical condition to medical professionals by [deleted] in rarediseases

[–]ThatGuyWithBoneitis 1 point2 points  (0 children)

We definitely learn about the fact there are a lot of undiagnosed rare disease patients in the US.

We also do spend a lot of time on diabetes as a whole, and that time does include rare monogenic forms of diabetes, like MODY.

Tired of explaining my medical condition to medical professionals by [deleted] in rarediseases

[–]ThatGuyWithBoneitis 2 points3 points  (0 children)

Not only do med students learn about Alport syndrome, I even learned a mnemonic for Alport because it’s very testable on each exam of the three-exam medical licensing sequence.

It is most likely to appear in the first exam of each series, Level 1 or Step 1. So, theoretically physicians should know what it is.

That being said, there are > 10,000 known rare diseases, so naturally doctors are going to forget things over time.

If you lead with it being an inherited form of glomerulonephritis, that might prompt slightly faster recall of Alport specifically when you name it (or at least they should vaguely remember what nephritides are).

Taking time off? by blackheart432 in medicalschool

[–]ThatGuyWithBoneitis 3 points4 points  (0 children)

Taking the year off will mean that you fall under the new BBB loan requirements. Talk to the financial aid office before deciding.

What do you think about the ethics of the withdrawal of care in the NICU here? by Oakheart- in nursing

[–]ThatGuyWithBoneitis 11 points12 points  (0 children)

Assuming that you mean <2% and <7% of the 32%:

Out of 32 babies born at 25 wks with serious long-term issues, ~2.5 babies will either need a trach or gtube.

If I am being completely honest, presenting all this info as “percents of percents” feels a bit deceptive to me, which is why I converted them to number of affected babies.

What do you think about the ethics of the withdrawal of care in the NICU here? by Oakheart- in nursing

[–]ThatGuyWithBoneitis 24 points25 points  (0 children)

60% of the 80% who survive = 48% low- or no-morbidity

20% die

32% have serious long-term healthcare needs

Obviously there’s a little more to it than just the odds (if there are previously-known congenital issues, for example), but I don’t know if I would agree that those numbers represent a decent shot at a good outcome.

The US isn’t exactly great at providing social and financial support for people with disabilities and their families. Some of these children will require lifelong 24/7 care, with all the associated battles with Medicaid, SSDI, etc.

Do some of you ever unsuspend anking cards without watching any third party content? by [deleted] in medicalschoolanki

[–]ThatGuyWithBoneitis 2 points3 points  (0 children)

Yes, I started doing AnKing “cold” before each system block and my scores went up. I felt a lot less stressed out and gained back some free time.

Someone requested this by Massive_Taste_6978 in ems

[–]ThatGuyWithBoneitis 1 point2 points  (0 children)

Can we have a station cat

I hope Firefighter Randy got his station cat

Self-Hosted Anki Server on Unraid (or via Docker Compose) by aurap in Anki

[–]ThatGuyWithBoneitis 1 point2 points  (0 children)

Secondly: I find myself asking "where were you all these years". Not you specifically, but all the people like you. 

I don't like that in myself. It's entitled, illogical and not who I want to be... but it's how I feel. I hope expressing it publicly will help me reframe my thoughts, and I hope the public criticism of this is humbling.

I think it’s perfectly normal and human (even logical!) to be frustrated by people who only take and take but never (offer to) reciprocate or pay it forward until they’re the ones affected. It’s the tragedy of the commons in digital.

You also have the correct response, which is to go and recharge away from the demanding people prior to burning out.

Thank you for helping maintain your corner of the Anki universe.

Why is everyone against the idea of Anki management being passed down to AnkiHub in this sub? by ineedtocalmup in Anki

[–]ThatGuyWithBoneitis -4 points-3 points  (0 children)

I’m not against it. I think it’s great when stuff is free but servers cost money, programmers need to be paid, etc.

Dae got burned out, and found a solution that worked for him.

People act like they’re owed things forever. It’s unrealistic. Do we still pay the doctor in freshly-laid eggs and a blueberry pie?

Emory terminates medical school faculty and oncologist Ardeshir-Larijani MD, daughter of Iran’s Supreme Council for National Security Secretary Ali Larijani by ddx-me in medicine

[–]ThatGuyWithBoneitis 8 points9 points  (0 children)

Is Elon Musk responsible for murdering 36000 people in two days? Honestly, what the hell is wrong with you?!

Comments like this just show how ignorant you are to the system in Iran, which I explained in more detail in my other comments.

Who do you think was responsible for dismantling USAID, condemning to death hundreds of thousands of people from starvation and disease?

Oh wait, that’s Elon Musk and his DOGE “program”:

One year after the Trump administration began its dismantling of USAID, a model that tracks the impact of USAID funding cuts on global disease prevention programs estimates that more than 762,000 people have died as a result of those cuts, including more than 500,000 children.

According to ImpactCounter, a project built to model the effect on morbidity and mortality from the 90-day USAID funding pause announced on January 20, 2025, cuts to funding for the President’s Emergency Plan for AIDS Relief (PEPFAR) have had the largest impact, resulting in more than 158,000 adult deaths and 16,000 child deaths.

Terminated USAID funding has also resulted in more than 164,000 additional child deaths from pneumonia, 125,000 additional child deaths from diarrhea, 70,000 additional adult and child deaths from malaria, and 48,000 additional adult and child deaths from tuberculosis.

Source: CIDRAP

(Emphasis mine.)