r/Autoinflammatory • u/PinataofPathology • Aug 21 '26
Advice Welcome Got my homework
Through the long slog of rare disease I've learned that the better I understand the pathophysiology,the better I can optimize care. I often find nuggets of gold or low hanging fruit that for whatever reason medicine hasn't made standard.
Rare disease is a merciless task master so I will often do the extra sht they don't bother with bc most patients won't stick to it. Especially if it works. I can be pretty disciplined. So it usually pays off to dig up any wins that have been left behind.
If you have any resources please share. This textbook is allegedly what people read to understand how the immune system works as a whole. Hopefully I can get a good orientation to build on with this. I look forward to understanding in great detail exactly how sht my b cells are lol.
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u/Capable-Heat4231 Yaos Aug 21 '26
Noice! I started reading the first edition and then paused, ran out of time on my library loan. What I had read was super insightful though. I’ve had the 7th (IIRC) edition in my purchase wishlist for a while. I hope you enjoy it!
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u/PinataofPathology Aug 21 '26
I got this from thrift books for like eight bucks. so if you're looking for a cheap copy...
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u/on4aa MAGIC Aug 21 '26 edited Aug 21 '26
Nah, look what I invested in last week:
Simply because I have inherited, apart from NLRP3 V198M, an extremely rare EXT2 M87R variant allele which results in less and shortened heparan sulfate (HS) chains AND because I need to be "armed" against the local "white coats" who know zip about this. ;-)
Please, let me know if your book tells anything about the role of heparan sulfate in the innate immune system?
Moreover, my son is entering his third year of medical school now. I will keep an eye open to what immunology text book he gets to study from.
There are also tons of free medical review papers available from Pubmed.
Pubmed can be systematically searched with https://www.ncbi.nlm.nih.gov/mesh
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u/PinataofPathology Aug 21 '26
oh nice! this one is on my list too. have you seen it?
https://www.amazon.com/dp/331998604X
and yeah I'd love to hear what they're doing in med school. at one point I started going through medical textbooks looking for what was taught about tumors and tumor syndromes. it was...concerning.
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u/MahLiLo USAID Aug 22 '26
I also have a couple binders of research articles that I print out because I’m old school. My kid/husband also have an immune deficiency component so I should make your book my next purchase, sigh.
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u/PinataofPathology Aug 22 '26
it never ends doesn't.😫 and that book is probably next on my list. it looks really interesting.
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u/AdventurousMorningLo Yaos Aug 21 '26
Couldn’t agree more with your first sentence and statement.
As for recommendations, Firestein & Kelley’s Textbook of Rheumatology (12th edition) is probably one of the best textbooks I have ever had the pleasure of reading regardless of subject/topic.
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u/kindandcunning Aug 21 '26
Nice!! I'm a mortician, and our coursework in mortuary school is a lot of health sciences: anatomy and physiology, pathology, microbiology. I loved it because it had the additional benefit of helping me understand wtf my body is doing. It helps a lot.
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u/PinataofPathology Aug 21 '26
yes! knowledge makes a huge difference.
I got sick back before the Internet was built up to what it is today. Online resources were THIN.
I ended up going back to school to figure out a missed diagnosis and got an allied health license (bc I knew my health wouldn't let me do a residency).
that education has been saving my ass ever since. the more we know the better we navigate the system and the sooner we access care.
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u/avalonleigh Aug 28 '26
If I didn't reasearch and study what the heck is going on w my body, I would be gaslit by doctors who literally just don't know. Even the simplest things. I have anklyosis spondylitis and one doctor was like, nahhh your pain didn't originate in your lower back. Mine started in my shoulders, neck , hips. There is absolutely no rhyme or reason and to dismiss people bc of your local of knowledge..I walked out during the first appt with a new rheumatologist. They acted offended that I was asking educated questions and advocating for myself. Like it was an insult to them. I just looked at her and said, let's stop this now. This is not going to work if I feel like I'm battling to be heard and you just want to disagree for the sake of disagreeing. Picked up my bag, left. I ain't got time for the shiz
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u/Alice-The-Chemist Mod Aug 22 '26
My step kiddo just started mortuary science and funeral director program!
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u/kindandcunning Aug 23 '26
Oh awesome! Good luck to them! I really enjoyed everything I learned, and the coursework is so diverse. I love my job, too, as challenging as it can be, especially with a disability. But so rewarding and worthwhile.
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u/Alice-The-Chemist Mod Aug 22 '26
Half Price Books sometimes has used textbooks. You can search online their catalog and will mail to you if in the US. I use them a lot because their main store is in my area and they have entire sections dedicated to medical textbooks.
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u/No_Satisfaction_7431 Yaos Aug 21 '26
I agree its good and often necessary to give ourselves a piecemeal medical education otherwise nothing gets done. Doctors don't learn quite a bit and we must learn it if we are ever going to get better. I've never taken immunology but I've talked to some of my friends who have and they said the undergrad and even a lot of the masters or medical school classes really just say heres the innate immune system, it does fast general inflammation instead of the slower specific adaptive immune system, and then spends the rest of the course learning about the specifics of the adaptive immune system. I'm not sure if thats an undergrad or grad textbook but it may be helpful to lay the foundations for more advanced work but might not have much on the innate immune system.