Reddit mentions: The best books about epylepsy

Hello! I have lots of recommendations for you, though, I can't think of much for ethics off the top of my head, except for textbooks. I did take an online class that teaches students about genetic counseling offered by South Carolina and some ethical issues were discussed there. Like you, I also love reading and have found a variety of resources. For starters, this subreddit posts decent articles from time to time, so lurk here!


Textbooks
A Guide to Genetic Counseling: This is like the book for genetic counseling programs. It offers a comprehensive overview of counseling and most ethical things I've read about are through this text.


Facilitating the Genetic Counseling Process: This book is designed to help you learn how to communicate effectively with clients/patients.


There are more textbooks to read about genetic counseling that you can find via Amazon. If you want to learn more about diseases, maybe check out Smith's Recognizable Patterns of Human Malformation.


Online
I have found a few things to read online. In case you haven't heard of it The DNA Exchange is excellent. The writers are great and they tackle a whole host of issues. Two magazines I really enjoy are Genome and Helix.


Also, if you're not familiar with GINA, the National Coalition for Health Professional Education in Genetics (NCHPEG) has a web page that explains it nicely.


Also, Unique has the cutest comic ever that explains rare diseases to siblings. Not to mention, that website has a lot of handouts on rare disorders!


Books
I found out about 90% of these books through the online class I took, which I mentioned at the beginning of this comment. I decided to link and give a few lines of each Amazon description to you so you don't have tab fatigue. Of these books, I have read Waiting with Gabriel and Before and After Zachariah. Both are excellent and raise great discussion points.


Choosing Naia: A Family's Journey by Mitchell Zuckoff - A dramatic and carefully detailed account of one family's journey through the maze of genetic counseling, medical technology and disability rights.


Babyface: A Story of Heart and Bones by Jeanne McDermott - When Jeanne McDermott's second child, Nathaniel, was born with Apert syndrome-a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens-she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family's traumatic yet enriching experience.


Waiting with Gabriel by Amy Kuebelbeck - This memoir is the true story of parents who were told that their unborn baby had an incurable heart condition, confronting them with an impossible decision: to attempt risky surgeries to give their baby a chance at a longer life, or to continue the pregnancy and embrace their baby's life as it would unfold, from conception to natural death.


Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic by Martha Beck - Expecting Adam is an autobiographical tale of an academically oriented Harvard couple who conceive a baby with Down's syndrome and decide to carry him to term.


Spelling Love with an X: A Mother, A Son, and the Gene that Binds Them by Clare Dunsford - Spelling Love with an X is the first personal memoir about living with fragile X and a reflection on the fragility of human identity in the age of the gene. Recalling the psychic wound of learning that she is genetically "flawed," Dunsford wonders: What do you do when you discover that you are not who you thought you were?


The Spirit Catches You and You Fall Down by Anne Fadiman - The Spirit Catches You and You Fall Down explores the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy. Lia's parents and her doctors both wanted what was best for Lia, but the lack of understanding between them led to tragedy.


Give Me One Wish by Jacquie Gordon - This is the story of a remarkable mother and daughter and their love as they make sense of life, and their relationship, in the face of a deadly disease. Jackquie Gordon cannot cure her daughter Christine's cystic fibrosis, but she can teach her to follow life's gifts wherever they lead so that she grows up eager to discover the world and her place in it.


Before and After Zachariah by Fern Kupfer - The heart-wrenching story of one couple's courageous decision to have their severely brain-damaged son cared for in a residential facility.


Anna: A Daughter's Life by William Loizeaux - Born with a number of birth defects known as VATER Syndrome, Anna Loizeaux’s chances for survival were uncertain.


Old Before My Time by Hayley Okines - In medical terms her body is like that of a 100-year-old woman. Yet she faces her condition with immense courage and a refreshing lack of self-pity.


Pretty is What Changes: Impossible Choices, the Breast Cancer Gene, and How I Defied my Destiny by Jessica Queller - Eleven months after her mother succumbs to cancer, Jessica Queller has herself tested for the BRCA gene mutation. The results come back positive, putting her at a terrifyingly elevated risk of developing breast cancer before the age of fifty and ovarian cancer in her lifetime.


There's also Lisa Genova's books. You've probably heard of Still Alice, which is about a woman who is diagnosed with early-onset Alzheimer's. That was a good read! Her other books also deal with various medical diagnoses and I've heard Inside the O'Briens is quite good as well.


I hope this all helps. I apologize for the length, but I really wanted to share what I could! If you're interested, I could give you some ethical dilemmas to think about. I remember a few from interviews and reading about genetics. Good luck. Feel free to PM me if you have any questions about applications/interviews!

For intro sociology, I'd recommend some preachy nonfiction. They are written for laymen but introduce the sociological style of approach. Something like Fat Land or Uninsured in America.

Freakanomics is not exactly sociology, but could be an interesting read for someone interested in social economics / group behavior. Jonathan Kozol is a reporter, not a sociologist, but his stories mix investigative reporting with a human element to focus on topics of interest to the field of sociology. I remember Nickel and Dimed also being a good read.

The Spirit Catches You and You Fall Down is not a book about sociology, but rather a specific example of culture clash within the context of medical care. That being said, it is a big reason why I decided to become a social worker (which is a profession in line with the two fields mentioned in your post).

A Place at the Table is a movie that might fit the bill.

Note: I'm American. I imagine other places would have different topics of interest.

Edited: add movie and fix format

The Giver (Lois Lowry) https://www.amazon.com/Giver-Quartet-Lois-Lowry/dp/0544336267/ref=sr_1_1?ie=UTF8&qid=1537663349&sr=8-1&keywords=the+giver+by+lois+lowry

The Spirit Catches You and You Fall Down (Anne Fadiman) https://www.amazon.com/Spirit-Catches-You-Fall-Down/dp/0374533407/ref=sr_1_1?ie=UTF8&qid=1537663409&sr=8-1&keywords=the+spirit+catches+you+and+you+fall+down

Looking for Dei ( David A. Willson) https://www.amazon.com/Looking-Dei-David-Willson-ebook/dp/B078KNKC7D/ref=sr_1_1?ie=UTF8&qid=1537663480&sr=8-1&keywords=Looking+for+dei

Snow Flower and the Secret Fan (Lisa See) https://www.amazon.com/Snow-Flower-Secret-Fan-Novel/dp/0812980352/ref=sr_1_1?ie=UTF8&qid=1537663558&sr=8-1&keywords=snowflower+and+the+secret+fan

Moloka’i (Alan Brennert) https://www.amazon.com/Molokai-Novel-Alan-Brennert/dp/0312304358/ref=sr_1_1?ie=UTF8&qid=1537663608&sr=8-1&keywords=molokai+book

I could recommend a dozen more, but these are a few of my favorites. Sorry I could not make the links pretty. Thank you for this fun contest, I love books so much!

um theres this van gogh notebook for $1.99, but its got free prime shipping http://amzn.eu/aDupw9S https://www.amazon.com/dp/0486498549/ref=sxbs_sxwds-stppvp_1?pf_rd_m=ATVPDKIKX0DER&pf_rd_p=d45777d6-4c64-4117-8332-1659db52e64f&pd_rd_wg=12cy7&pf_rd_r=Q048N88G81V27FD65S6C&pf_rd_s=desktop-sx-bottom-slot&pf_rd_t=301&pd_rd_i=0486498549&pd_rd_w=HO0V0&pf_rd_i=under+%241&pd_rd_r=c1db309c-e072-4c45-8aab-83de4265d871&ie=UTF8&qid=1536317308&sr=1
oh look, monet water lilies notebook is $1.38 https://www.amazon.com/dp/0486413608/ref=sxbs_sxwds-stppvp_2?pf_rd_m=ATVPDKIKX0DER&pf_rd_p=d45777d6-4c64-4117-8332-1659db52e64f&pd_rd_wg=12cy7&pf_rd_r=Q048N88G81V27FD65S6C&pf_rd_s=desktop-sx-bottom-slot&pf_rd_t=301&pd_rd_i=0486413608&pd_rd_w=HO0V0&pf_rd_i=under+%241&pd_rd_r=c1db309c-e072-4c45-8aab-83de4265d871&ie=UTF8&qid=1536317308&sr=2


or you could get 3 things of elmers glue for your crafts https://www.amazon.com/Elmers-Liquid-School-Washable-Ounces/dp/B010DS107K/ref=sr_1_21_a_it?rps=1&ie=UTF8&qid=1536317308&sr=8-21&fpw=pantry&keywords=under+%241&refinements=p_85%3A2470955011

photo prints for $0.09 each https://www.amazon.com/dp/0486413608/ref=sxbs_sxwds-stppvp_2?pf_rd_m=ATVPDKIKX0DER&pf_rd_p=d45777d6-4c64-4117-8332-1659db52e64f&pd_rd_wg=12cy7&pf_rd_r=Q048N88G81V27FD65S6C&pf_rd_s=desktop-sx-bottom-slot&pf_rd_t=301&pd_rd_i=0486413608&pd_rd_w=HO0V0&pf_rd_i=under+%241&pd_rd_r=c1db309c-e072-4c45-8aab-83de4265d871&ie=UTF8&qid=1536317308&sr=2

theres also a bunch of prime pantry items. like white cheddar and shell pasta, fried rice, and candy for #1 or less.

yeah, all of those have free shipping, otherwise I might have found cooler stuff :)

Hmong people have been ran out of their lands throughout history. I read The Spirit Catches You and You Fall Down by Anne Fadiman for my cultural studies in health class. Fadiman does an excellent job of briefly catching the reader up on the history of the Hmong people and explaining the importance of story telling in their culture as way to keep their history alive. In order to tell a Hmong story, you often start at the beginning of the world and go from there. Just an interesting thing I read and thought you might enjoy the book!

The Spirit Catches You and You Fall Down

First, find a pediatric neurologist and make an appointment with them as soon as possible. They'll walk you through a lot of the things that you will need to know.

You should also check out The Brainstorms series. I got the companion from my neurologist back when I was a teenager, and I still have it to this day. There are a number of books in the series, dealing with everything from childhood epilepsy, women's epilepsy, a guide for friends and family, a personal account book, and a few others. You can get the entire set on Amazon for $25 or so, and you can usually get at least one book from the series for $1 or less. I used to loan out the companion book to all of my new friends when I had to explain what seizures and epilepsy in general were.

I'm sorry you have to go through this. Your son will greatly appreciate all of the help you give him over the years, however. That's one of the most important things you can give him. Support is hard to come by.

It's 5.5 by 4.1 inches. I'm pretty sure this is the one I got
http://www.amazon.com/Van-Goghs-Starry-Night-Notebook/dp/0486498549/ref=sr_1_1?ie=UTF8&qid=1426731348&sr=8-1&keywords=starry+night+dover+notebook

And that's a really good and positive way to think of the bucket list! :)

Marino’s ICU Book is great. The latest edition from Amazon comes with an Inkling copy which is convenient on the go. The Washington Manual of Medical Therapeutics and Critical Care are both good quick references, though they have less explanation than Marino’s.

For Anesthesia, Miller’s Anesthesia is the standard Harrison’s-style specialty text. At the medical student level a lot of places recommend “Baby Miller” aka Basics of Anesthesia. I personally preferred Morgan & Mikhail’s Clinical Anesthesiology, but both are good introductory texts. FWIW, my school had both available online so it was easy to pick and choose.

> I never said that understanding how our societies work is achievable. That was your claim as the "expert."

There is a massive gulf between the vague statement, "understanding how our societies work," and the specific ability to predict the probability of a riot in a particular city on a particular day. Much of that gulf has been crossed.

>Actually, your claim was far more laughable, not only that such a goal is achievable but has already been achieved.

Are you forgetting the part in the comment you literally just replied to where I said that that claim was absurd, making it seemingly unlikely that I was the one making it? You have a serious, serious issue with finding meaning in other people's statements that was never there in the first place.

>So, you "begged to differ" when I stated that we do not understand the complex systems that are human societies.

Because we have some understanding. Do you only deal in absolutes? There's a bad joke in there.

>The only way I'm aware of to measure understanding of a complex system is to measure our ability to predict what that system will do.

The modern social sciences have made something of a point of being explanatory rather than predictive. The way that you test an explanatory model is you measure its ability to improve your effectiveness in responding to an issue. Explanatory models of illness are a good example, detailing the ways in which patients understand and interact with their illness. All of the articles linked here are excellent, or you could read The Spirit Catches You and You Fall Down if you're more in the mood for prose. By better understanding how health and medicine function in different communities, we can alter our medical practices to achieve better results.

> Religion isn't an attempt to literally explain metaphysical truth, metaphysical truth cannot be literally explained. It's an attempt to conceptualize it.

Well how do you know that it even exists to have the need to explain it?

Physicists actually can explain the 4th dimension, or at least they can do it as well as they can, but the point is that there's actual evidence that it exists. Unlike any evidence for there being a metaphysical reality of God.

> Religion, to that painting, would be an attempt to understand that 3rd dimension given it's limited perspective.

Where's the evidence for that? That it even exists.

> There is absolutely a metaphysical reality that is not conceptual. It's absolutely there, however it can only be experienced subjectively.

Well, I, subjectively don't experience it and thus it doesn't exist. (?)

> But regardless, to me you do have an essential nature, there is an essence that is the you-est you. But in the physical world, you manifest your potential to be "all" of you in limited ways.

There's a conceptual idea of the best you could be, Plato's forms, but that's just an idea, an ideal, it doesn't exist unless you get there. No more than the nuclear end of the world that I just imagined as I'm typing this.

> I didn't want to go into this place because it's clear you find this sort of conceptualization to be poppycock. But the experiences I've had seem somewhat universal. They align with people hwo've taken psilocybin. I don't advocate that method of reaching those states, for me it's meditation that works.

I'm trying to mediate at least once a day buy man my scheduling needs work and so a lot of the times it falls off.

As for psychedelics - what makes you think that what you saw / felt whatever was more real than reality?

Have you ever heard of Cotard's delusion? There's this facinating book about a few psychological disorders called "The Man Who Wasn't There. Recommend if you are into psychology.

Well anyway, this delusion basically makes people think that they are brain dead. That somehow even though they know that if your brain is dead then you are dead but they are talking to the doctor about this, like their reality is absolutely out of whack because of this mental thing they are going through.

Well, the point is that you can have physical things happen that affect your brain that will make you perceive reality differently even though reality didn't change.

So who is to say that specific psychedelics don't simply act in specific ways to create specific ideas in the brain? It's all simply a physical mechanism.

Harris for example is a "master" mediator, well, compared to most people, and he has had experiences with meditations but he isn't any less atheistic just because of it. So I don't necessarily buy that just because you got to a certain point in meditation that you will experience something transcended, metaphysical (not YOU you, general you).

> then things become clear to you that you cannot really express because of the limitation of going back to DOing.

Well, some people have expressed it and see it differently from you.

> Anyone can receive signals from any brain already.

No. Many studies throw away data from patients deemed to be BCI incompatible. This ranges from 10%-20% depending on what the experiment is focusing on for their work. There is no magic tool to get signals from any brain with enough fidelity to ensure signal quality. The massive push to develop painless dry electrodes is underway, but extremely difficult.

link: paper on BCI illiteracy issue

>Nobody understands them.

Again, no. Neurologists understand them. Anyone can be taught to read an EEG to infer a basic understanding of the recording. Seizure versus normal is easy, but it goes as far as resting statues, focus states, alcoholism, pain, motor movement, even understanding artifacts, etc. Lots of people understand basic components of what are EEGs mean, but the underlying concepts remain to be proven.

link: paper on understanding pain response

>If i record your brain signals and say "think of turning on the light" you do, I capture that, program my light switch to turn on the light when it gets that signal, voila. Thought activated lights.

In many studies this works with the help of machine learning algorithms to process what the user thought and match it to a given test case. These studies suffer from a problem of the brain and computer both trying to learn what the other is doing resulting in performance changes over time. The machine attempts to keep learning as the brain keeps adapting to help the machine process the data. This is why very advanced prosthetics on the bleeding edge require setup sessions every day before a patient can perform any objective. And some days it just doesn't work, while other days it works beautifully.

link: Paper on teaching people to use brain to control virtual limbs

>But nobody understands brain waves still,

This isn't true. People understand brain waves to some extent, but not as deep as they would like to help them deal with medical issues and BCIs.

Lots of books on this topic: Reference text for reading EEGs and what they mean

>and nobody can send signals to the brain.

We can send signals to the brain. How do you think all those stim systems work for controlling bladder issues or how we address movement disorders via stimulation. We send all sorts of signals to the brain to help it perform better all the time.

Link: Medtronic's DBS system that helps people on a daily basis

>We are a long way from the technology you're thinking of. Thought control one way through bonded commands is accessible within a decade, imo.

If all you want is one way communication with your thoughts, we've had that for years with P300 spellers. You don't need to do much more than see or hear a signal and we can get you to communicate very accurately, but very slowly through this method. Even the terrible Emotiv stuff can be used for this if you play with the electrode configuration a little bit.

link: P300 speller contest

>What you're talking about is probably centuries away.

Sort of? If there are electrodes implanted in your brain in the correct areas I could turn off your ability to speak or your ability to process language. We could even inhibit your ability to balance. However, if you want to inject a specific thought or make me think of the color red that will take longer to develop.

I'm a medical anthropology Ph.D student studying/interested in infectious diseases. Let me try to explain.

It's not so much that educating people about biomedicine is not going to work, more that the education is not being done in a good way. Weird people walking in trying to get them to completely disregard their long, LONG standing beliefs for this new form of "witchcraft" that is completely counter-intuitive is never going to work; this is a cliche, but imagine if the tables were turned and they came here to help us fight an epidemic and insisted germs weren't real and that it was sorcery that was the issue (I know, not a perfect analogy because of one of the systems of knowledge is "scientifically correct" and the other isn't). But, your solution of coming up with brand new magic to incorporate into their beliefs wouldn't help either, because it's not a deeply-ingrained belief. These people have been living with these belief systems for thousands of years. Every part of what they believe about health is interrelated with what they believe about God, relationships with each other and nature, etc. Every part of knowledge is connected with every of type of knowledge. So to run in and say, "Here are your new magic beliefs on health," would never work, because the new beliefs wouldn't be compatible with the rest of their beliefs.

What actually needs to happen is finding a way to make biomedical knowledge compatible with their traditional knowledge. Think of it kind of like how the Christians "got" pagans by turning their old holidays into new Christian holidays. This is why anthropologists (think "cultural brokers") are so sorely needed in situations like this--and the CDC and WHO know this and are hiring/consulting with medical anthropologists...but it should be done before disasters happen, because, like everything, it takes time.

This is rather stream of consciousness so it might not make sense, but it's all I can crank out for now.

Edit: For the people who are interested in medical anthro, I'd suggest reading Stranger in the Village of the Sick by Paul Stoller, The Spirit Catches You and You Fall Down by Anne Fadiman, and especially Inequalities and Infections by Paul Farmer.

> Now that I'm on the other side as a medical student, I've seen studies that show patients prefer physicians of their own race[6] . From personal experience interacting with patients, communication is easier and a higher level of care can be provided if the provider understands the patient's culture.
>

I don't know much about the field, but from what I understand, research points out that understanding the culture is primordial for health care service delivery. it's just easier if the patients and the medical practitioner are of the same ethnic background. It also happens to Asian too, you should read this book book by Anne Fadiman, its an eye opener.

My little Barbara girl is a pittie mix and she was diagnosed with idiopathic epilepsy when she was 3 I think. She is 5 now and it's been over a year since she had her last seizure. She's doing great now! There were times when I thought we were never going to get them under control. She's on phenobarbital twice a day and potassium bromide once daily. I know it's scary watching them struggle with seizures. Remember to stay calm. Keep the Valium injection handy in case she has one that is lasting more than 5 minutes; it could prevent brain damage and save her life. If you have any questions, feel free to DM me. I spent countless hours researching epilepsy.

This is her:
https://imgur.com/a/GsqLqDz

Here is a book I bought and found it to be particularly helpful. There's a used one available on Amazon for $7.75 right now.

My dog has epilepsy...but lives life to the full!: A practical guide for owners https://www.amazon.com/dp/1845846192/ref=cm_sw_r_cp_apa_i_J9PnDbB2C4PE6

This is $1.50 and PRIME. :)

Thanks for the contest! I'll see you on the sister sub, hopefully!

I loved The Spirit Carches You and You Fall Down by Anne Fadiman. (Amazon link here.)

It’s a true story and completely fascinating. Here’s a really quick excerpt on what Wikipedia has to say about it:

“[The book] chronicles the struggles of a Hmong refugee family from Houaysouy, Sainyabuli Province, Laos, the Lees, and their interactions with the health care system in Merced, California. In 2005 Robert Entenmann, of St. Olaf College wrote that the book is ‘certainly the most widely read book on the Hmong experience in America.’

Through miscommunications about medical dosages and parental refusal to give certain medicines due to mistrust, misunderstandings, and behavioral side effects, and the inability of the doctors to develop more empathy with the traditional Hmong lifestyle or try to learn more about the Hmong culture, Lia's condition worsens. The dichotomy between the Hmong's perceived spiritual factors and the Americans' perceived scientific factors comprises the overall theme of the book.”

Ethics in Anthropology. Gets very heavy into some of the important considerations for anyone thinking about a life in anthropology. Class was structured like a grad seminar, with each week the readings assigned to two people who lead the class discussion. Then for the big reads we had a formal debate with the class. There were four teams, broken up in two private debate sessions. You were assigned a side on the issue the day of the debate. All of this keeps you up on reading, and really really gets you invested in the topics. Also, some of the best case studies from the field. Favorites were:

The Fierce Controversy
http://www.amazon.com/Yanomami-Fierce-Controversy-California-Anthropology/dp/0520244044

The Spirit Catches You and You Fall Down
http://www.amazon.com/Spirit-Catches-You-Fall-Down/dp/0374533407/ref=sr_1_1?s=books&ie=UTF8&qid=1343382480&sr=1-1&keywords=spirit+catches+you+and+you+fall+down

The Yale/Maccu Piccu Debate
http://lastdaysoftheincas.com/wordpress/peru-yale-machu-picchu-controversy-part-1

If you're interested in a great book that explores the clash between medicine and culture I'd recommend The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures

For some good reading on this history and on some medical ethics, The Spirit Catches You and You Fall Down is an amazing book.

http://www.amazon.com/The-Spirit-Catches-Fall-Down/dp/0374533407

Here is the polish that caught my eye
Van Goh was able to paint this starry masterpiece due to stars existing! IN SPACE!
...TO INFINITY AND BEYOND! I love Toy Story.

1.50 awesome notebook

Or .89 awesome stolen laser beams lol

Anatomic Path - Sternberg

Neuropath - Ellison & Love

Forensics - Spitz & Fisher

also a fun coffee table book useful for alienating visitors to your home

If you're interested about the Hmong in America I recommend The Spirit Catches You and You Fall Down by Anne Fadiman.

I would say that if you're really interested I'd start with this or this. Here is one free article on just that specific topic.

But as an anesthesiologist I mostly see it in acute airway obstruction, such as a patient biting down on an endotracheal tube during extubation, a patient with an obstructive mass, etc. It certainly can happen during diving, especially with a kinked hose or breathing far past what your regulator can deliver or something - but I'm really not as familiar with that setting. It's easy to imagine it getting confused with regular drowning or near-drowning.

I would suggest reading The Spirit Catches You and You Fall Down.... May be enlightening.
http://www.amazon.com/The-Spirit-Catches-Fall-Down/dp/0374533407

You may want to check out the non-fiction book, When The Spirit Catches You And You Fall Down (https://www.amazon.com/Spirit-Catches-You-Fall-Down/dp/0374533407)

Story of a Hmong family's interactions with the American healthcare system. (It's more compelling than that might sound...) I think it was a bestseller when it was published ~20 years ago.

Orrin Devinsky has a couple good books if you're looking for more information. This is one that has helped me a lot.

https://www.amazon.com/Epilepsy-Patient-Family-Guide-Third-ebook/dp/B004HO59GU/ref=sr_1_4?s=books&ie=UTF8&qid=1493770526&sr=1-4&keywords=devinsky

The Spirit Catches You and You Fall Down by Anne Fadiman. My Program Director has said that he wishes all of his residents would read it.

On Amazon, of course!

I apologize for mentioning that the linked site has an agenda, you're right, it's immaterial. I have never worked in a hospital. Furthermore I'm sorry that I hurt your feelings, I did not intend to attack you; What I was suggesting was that patients, for instance, might be more forthcoming when interacting with a doctor of their own ethnicity, in a manner that is outside if that physician's control.

I base this almost entirely on this book (https://www.amazon.com/Spirit-Catches-You-Fall-Down/dp/0374533407) which details "the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy". Also a very interesting read.

What you need to know if epilepsy has touched your life. Very practical guide by some top epileptologists https://www.amazon.com/What-need-know-epilepsy-touched/dp/1475105312

Handbook of pediatric neurology or Fenichel's Clinical Pediatric Neurology

Epilepsy: Patient and Family Guide

100 Sideways Miles?

Navigating Life with Epilepsy (Neurology Now Books) https://www.amazon.com/dp/0199358958/ref=cm_sw_r_cp_apa_3ZCcAbJJYGXDV

this book has a captivating tone but wasn't able to finish it yet

and this book provides perspective in dealing with and understanding foreign culture in a medical setting

The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures.

http://www.amazon.com/The-Spirit-Catches-Fall-Down/dp/0374533407

I found it so helpful in my practice.

The case studies, the notion of an idea as an egg, maladaptive schemas, and autistics misinterpreting nuance (confusing red for green) all come from Anil Ananthaswamy's The Man Who Wasn't There: Investigations into the Strange New Science of the Self. All the psychology, and some of the philosophy, from those sections are in this book. It explores the neurobiology behind the self, and how its existence depends very much on the state of our body and brain. Very on topic with Farouk looking for his body and people theorizing that David is locked in his own mind.

• The spirit catches you and you fall down
  
  
• University of Washington's topics in bioethics page
  
  
• Complications: A surgeon's notes on an imperfect science
  
  

My issue is that religious institutions seem to seek out the worst possible way to solve a problem and them go about screwing that up too. I would (and do) find secular organizations perfectly capable of doing the same work without holding a metaphorical knife in the other hand. The difference of effect can be seen in the aboriginal peoples of Australia. Churches went in and destroyed entire cultures, cause inter tribe warfare and broke down hundreds of years of tradition in a few years. In a separate interaction health care workers and scientists went in to find the source of a serious brain degenerating illness. It turned out to be cannibalism of the dead (specifically their brains), they found a way to present the information to the people and bring the practice to a stop / help heal their people. After that they left them alone.

Does it always go that way? no. Would I rather fund the second option instead of the first? yes.

Another example of 'helping' without thinking would be the Missionaries that gave Hmong children in Vietnam donated clothing to wear. The clothing was made of synthetic fibers that require washing machines and modern detergents to clean safely. They basically become pox blankets (this one was discussed as part of additional reading / context for this book which is excellent and exceedingly frustrating to read).

edit: series'd a serious

Ones I can think of off the top of my head:

MG

• Prizefighter en Mi Casa, epilepsy and paralysis
  
• Incarceron & Sapphique, epilepsy in a fantasy world
  
• Breath, cystic fibrosis in a historical setting
  
  YA
  
  
• Girls Like Us, about two special ed girls rooming together in their first apartment
  
• 100 Sideways Miles, epilepsy
  
• Otherbound, epilepsy in a fantasy world + contemporary portal
  
• The Fault in Our Stars, cancer, amputation, blindness
  
• Song of the Magdalene, epilepsy in a historical setting
  
  Adult
  
  
• Miserere, leg injury
  
• The Curious Incident of the Dog in the Night-Time, autism
  
• The Universe Versus Alex Woods, scars and epilepsy
  
  You should also check out DiversifYA and #WeNeedDiverseBooks.

> You have been given voice and you used it.

This is not an exercise of using voices, we were supposedly discussing getting work done. If you won't back up your priority of race and ethics on how we should be making decisions in reality you should not be talking to other people. I would rather you stay until we resolve the issue but also I understand how hard it is to understand other perspectives. I dare you to stop running away and confront the counter point.

Well, Polio gets brought up a lot, but honestly it is great odds compared to a ton of diseases that can cause all sorts of nasty long term effects. Mumps can cause deafness, pertussis can cause pneumonia (early childhood pneumonia is linked to COPD later in life), encephalopathy, and death. Last year we hit a new record for childhood flu deaths of 172 (this is hyperbole).

I am not telling people what to do, but as a nurse, get your children vaccinated. Don't be lazy and live in a fucking echo chamber. If you distrust vaccines, do the research. If that doesn't convince you, talk to someone who experiences what happens when you don't vaccinate.

Also: the rate of autism diagnosis increased for two reasons: people have more access to medical professionals to make these diagnosis (prior to that many people with possible autism went undiagnosed). Two, professionals are more apt to correctly diagnose these issues with more experience. People forget we used to chain mental health patients up in asylums not that long ago. Humanity always needs a scapegoat.

Also read The Spirit Catches You and You Fall Down it really will open your eyes to how different cultures view diseases and the impact parents have on their children's health outcomes. No, don't blame the parents after reading it.

I am sure a lot of medical professionals that were in school recently were forced to read The Spirit Catches You and You Fall Down by Anne Fadiman, but this topic brings my thoughts back to it.

It deals with the struggle (from both sides) on how you cross cultural barriers when dealing with resistant patients. Where do you draw the line? When can you force your beliefs (as founded in evidence as they are) onto another? Do you call child protective services? Do you just let the family go, knowing their child will die due to their inaction?

It also really resonated that you should never be lazy. A patient in the book was a frequent patient who had the same small-ish problem every time she came to the ER. They would treat her and she would leave. When she presented another time with similar symptoms, they didn't think anything of it. They overlooked some big symptoms and misdiagnosed her, leading to a more critical situation. All because they were not critically evaluating the situation like it was a new one.

I don't know who is wrong or who is right. It is still an argument I struggle with.