Reddit mentions: The best books about genetic health

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!

I was diagnosed recently, as well, and still deal with a lot of the mental side though I've been pretty proactive at taking control of the situation. While others here have made some great points at dealing with the mental side, here are some additional things that have helped me -

Edward Muldowney's Exercise Program: Mr. Muldowney is based in Rhode Island and is considered a knowledgeable EDS clinician and researcher. This book is very extensive and lays out several months of an exercise program geared specificially for those with issues stemming from EDS. I was fortunate to find a physical therapy clinic that recently began treating EDS patients but I brought them this book and they were hugely grateful for the additional information. Half of the book is written for the PTs to understand the exercises and how to guide someone with EDS through the program. If your clinic doesn't feel they need to see this book, find a new clinic that's willing to learn.

Ehlers Danlos overview: This is a pretty well-circulated (around here, anyway) document written by an EDS doctor that aims to explain EDS in a way that's helpful for patients and those around them to better understand what they're going through. I shared this with my mother and a few others and I've heard that it helped them understand a lot more what I'm dealing with because it was just too broad and unwieldy to try and explain on my own. Even more, it was eye-opening for me because I began to realize issues I've had my whole life (that never seemed relevant) may have been interconnected with EDS itself.

Pain Management: I just found this the past weekend and thought it was also a great resource. It's meant to be a companion to an hour long lecture but the slides are still helpful and cover specific regions of the body, how pain originates, and how it may be treated. This is a great resource moreso for you than your family and friends but might be helpful for them once they understand the condition better, too.

I hope this helps you as it did for me. I know it can feel isolating and even depressing when you realize you can't do certain things anymore or that others may not understand. Even more when those that don't understand are doctors or medical professionals. But remember that there is an entire medical community out there that is trying to understand and treat this condition and they want to meet with you as badly as you want to meet with them. Find support groups, find referrals, do a lot of Googling and remember to be proactive. You have more control over this than it feels like sometimes and there are people that want to help, even if you don't know them yet.

So, Elysium is a company that sells a nicotinamide riboside stack. They have the quickest, easiest explanation of NAD+, nicotinamide riboside as a form of vitamin B3, and sirtuins (epigenetic repair mechanism) that I've read online. I don't take their supplements, but I feel like they do a good job explaining the science and making the case for why NR supplementation is beneficial.

David Sinclair had an excellent book published last month that goes over most of his research at Harvard on NAD, resveratrol, sirtuins, and all his (kind of weird) CRISPR experiments. I found the first few chapters of his book the most interesting. He goes really in depth on the subject of sirtuins, but in a way that's not too hard for a normal person to understand.

The two researchers who have most helped me understand the body's natural repair mechanisms are Satchin Panda at the Salk Institute (studies time restricted eating) and Valter Longo at USC (studies periodic fasting). I've read both their books. They're just ok. I feel like I learned more listening to them discuss their work on Rhonda Patrick's podcast than I did reading their books.

TBH, I really don't care too much about the longevity potential or the CRISPR stuff. I really just want some hope and relief from chronic fatigue NOW. Most longevity researchers study cancer, diabetes, or autoimmune disease in order to better understand why our bodies decline with age and their work is really interesting to read. Does any of their research have direct application to recovering from a glutening, or celiac disease in general? Probably???... but only time and clinical trials will tell for sure.

Hopefully someone will find all this as interesting as I do. Sometimes I really feel that it's not fair that celiac disease doesn't get the same intense attention from researchers as Crohn's or MS, but honestly we have it way easier than people with those diseases, so we do have something to be thankful for, and eventually the breakthroughs from studying fundamental autoimmunity will have some sort of positive implication for everyone who has a form of autoimmune disease.

I used to be really outdoorsy (hiking, camping, kayaking, rock climbing, ect) but over the years I slowly lost the ability to do that stuff and had to give it up completely. For a long time I forced my body to do what I wanted it to do out of spite and stubbornness and I ended up doing a lot of damage and made it much harder on myself in the long run. It’s been a long, difficult process but I’m learning to let go of the life I had and the life I expected to have. What I did was I figured out the aspects/benefits of my old hobbies that I needed and I substituted them with EDS friendly versions. It takes a lot of introspection and effort but it’s worth it and your future self will thank you! So, here’s what I do:

1. To keep myself fit and build my strength back I have a PT routine that I do every day. I’ve been following the Muldowney Protocol for the last 3 months and I highly recommend it. It’s similar to the program my EDS literate PT developed for me (and I’ve been able to teach myself basic anatomy and medical lingo) so I’ve been able to successfully follow the book by myself, but if you have the option I’d recommend finding a good PT to work with since they’ll be able to point out and correct unhealthy joint movements.
   
   
2. For that feeling of accomplishment and pride in myself for overcoming obstacles I’ve turned to more artistic hobbies. I’ve poured all of that energy into origami, painting and wire sculpture with the help of finger splints and wrist braces as needed. It may be difficult for me to go to the grocery store by myself but I can create a realistic rose out of a square of paper and frankly that’s so much more impressive than grocery shopping! It is so, so, SO important to be able to have at least one thing that EDS can’t take away from you. I really encourage anyone dealing with a disabling condition to find something like that, we all have our pride and it’s so depressing and discouraging to slowly lose the ability to do normal adult stuff. Instead, I take pride in my ability to do things that others can’t do. (Well, anyone can do it if they put in the work to learn and practice, but ykwim!)
   
   
3. For the adrenaline rush I’m learning how to ride a scooter. I grew up around motorcycles and my husband has several but they’re too rough on my joints to even ride on the back, let alone drive them. With my little Kymco scooter, however, I can sit comfortably and it’s lightweight and easy on my wrists so I can safely zoom around without hurting myself. So. Much. Fun! I’m taking it slow since I’m so fragile (lol) but I’m really looking forward to driving it around town. It makes me feel alive again, like I did when I was able to kayak and climb rock cliffs.
   
   So anyways, this is what has helped me and I hope it can help you or anyone else reading.

>methodically state the case for why creation is most likely and/or why evolution is unlikely.

You will find lots and lots of the latter. Very little of the former.

>I'd also be happy to read GOOD anti-creation books as well, provided they meet the above criterion of not being mocking.

Those would just be science books based on the academic literature, wouldn't they?

Here is my reading list form the past few months. These would be pro-evolution (a.k.a science). Creationism is mentioned in a few of them, but almost in passing because Creationism is simply not a factor in legitimate scientific research, so it gets pretty much no consideration.

Knock yourself out. ;)

• Your Inner Fish by Neil Shubin - Also, watch the three part series that aired on PBS hosted by Neil Shubin.
  
  
• Endless Forms Most Beautiful by Sean B. Carroll - An in depth look into developmental evolution.
  
  
• The Universe Within: Discovering the Common History of Rocks, Planets, and People by Neil Shubin
  
  
• The Link by Colin Tudge and Josh Young
  
  
• Before the Dawn by Nicholas Wade
  
  
• Relics of Eden: The Powerful Evidence of Evolution in Human DNA by Daniel J. Fairbanks - This and the other Fairbanks book listed below are the only books on this list with the intent to refute what creationists contend. He does this not by presenting the creationist argument and then trying to refute. He does it by simply presenting the evidence that science has born out regarding human evolution and genetics.
  
  
• The Story of Earth by Robert Hazen - this is a cool book about the history of the Earth and life and how geology and biology worked in tandem with other factors to produce life from the point of view of a protein biologist.
  
  
• Life: A Natural History of the First Four Billion Years of Life on Earth by Richard Fortey - Good general overview of evolutionary and geologic history.
  
  
• The Cambrian Explosion: The Construction of Animal Biodiversity by Edwin Douglas - This is the most academic book in this list and, as such, is the most difficult to read. It is a concise look at what we know about the Cambrian Explosion from the scientific literature.
  
  
• Life's Ratchet by Peter Hoffmann - Very good book about how the chaos wrought inside cells by thermal motion at the molecular level leads to the ordered functioning of the machinery of life.
  
  
• What is Life? How Chemistry Becomes Biology by Addy Pross - Super interesting take on the question, "What is Life?" He comes to a very interesting conclusion which might have implications for abiogenesis research.
  
  
• The Machinery of Life by David S. Goodsell - A neat little book that gets you acquainted with what it's really like inside of cells. A good companion book to read with Life's Ratchet as they highlight different aspects of the same topic.
  
  
• Evolving by Daniel J. Fairbanks
  
  
• Neanderthal Man: In Search of Lost Genomes by Svante Paabo - Very interesting book about the drama, blood, sweat and tears, Dr. Paabo shed to develop the techniques to sequence ancient DNA. You simply won't find books like this and Your Inner Fish above amongst Creationist literature because they simply don't do what these scientists do out in the field and in the lab.

Genetic statistics 👍🏻

As weird as it may sound, i love modern cities and i love living downtown. I'd start with Canada, because that's my favourite country, but i'd honestly love to travel all around the world. So many different cultures!

I read Marvel comics for fun, but atm i'm reading a book (well, i downloaded a free pdf of it because i'm a broke college student) called Endless Forms Most Beautiful. I'm not evo-devo but that's always been an interest of mine, so i like reading about it.

I only use braces when something is injured or I'm doing something I know will be particularly strenuous (would cause dislocations) gardening or cleaning the house comes to mind. I have just about every brace for every body part there is I think. Kinesiology tape is awesome but unfortunately causes blisters on me, not so awesome. What you really must do and keep doing is strengthen (very carefully) your joints and core. Mat based Pilates is the best way to do this that I have found. It's the only thing that helps my hips and it helps a lot. I really like this dvd:

https://www.amazon.com/Element-Pilates-Weight-Loss-Beginners/dp/B001AYWY6I/ref=sr_1_1?ie=UTF8&qid=1484954798&sr=8-1&keywords=pilates+dvd

Go slow, push yourself but don't hurt yourself, and work your way up till you can do the full dvd. It took me a month. If you aren't ready or able to do this level of exercise there's a PT book for EDS:

https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=sr_1_1?ie=UTF8&qid=1484954890&sr=8-1&keywords=ehlers+danlos+syndrome+physical+therapy+book

It's $50 but if you are so loose and unstable that you need to start here you should definitely invest in it. Ideally, it should be done with a PT but is explanatory enough to do it on your own.

edit to add: of all the braces I have I use the cheapo pull on ones from the drug store the most. They're the most comfortable.

I have a connective tissue disorder (defective collagen) that causes hypermobility among other things. I see a physical therapist twice a week and she's got me working on exercises from this book. The exercises won't reduce my range of motion but they help me build strength within a safe range of motion so I have better control of my joints.

Finding a physical therapist who understands hypermobility (or is willing to learn) is really important. Any PT can say "don't hyperextend, it's bad for you!" but it's a bit more complicated to work with someone who is hypermobile in many joints and doesn't even realize they hyperextend. A good PT will help you learn what a normal range of motion looks/feels like so you can try to stay within that range. I had to try several therapists before I found one who was willing to learn about my condition.

I don't know if you're just extra bendy or if you also have joint instability. I have a lot of joint instability and find that bracing various joints helps me be more active without hurting myself. Braces shouldn't be used as a substitute for strengthening exercises, though.

As far as medications go, I haven't had a lot of luck so far. Amitriptyline, gabapentin, meloxicam and etodolac all ended up making me sick and didn't help with my pain. I'm currently taking 50mg of tramadol 2-3 times a day...I'm still in a lot a pain but at least the tramadol reduces it enough that I don't have pain-related nausea anymore.

Muldowney Protocol. - it is worth EVERY PENNY.

I cannot say enough good things about this - it's a PT regimen for those with EDS.

It starts off really chill - like "MAN, THIS IS SO EASY, I CAN DO THIS FOREVER!"

Then as you work your way up in the system, you are like "yeah, okay, not so much" and it becomes a challenge - a good, easy, safe challenge for those of us with shitty joints.

It gave me a TON of mobility back.

Alternatively (when I am not 9 months pregnant and miserable) - I walk, ride a stationary recumbent bike, and swim (though, not as much as I would like to).

Swimming is good in theory - if you are fit. I have had issues with dislocation because it is easy for me to move too much.

They say that a good physical therapist who understands biomechanics is essential to help stay ahead of EDS. It's quite possibly the difference between keeping a fair amount of everyday functionality, or ending up with assistance from crutches or a wheelchair. I think you have to scrutinize who you see. Our bodies are delicate, so you don't want anyone asking you to push you past your physical limits. It's helpful if he/she is a bit humble and willing to learn about EDS first.
There is a PT center in Rhode Island that came to specialize in helping EDS patients. He was getting calls from all over the U.S. with questions. After some friendly pressure from a patient, he agreed to write a book. [Kevin Muldowney's book: Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS] (https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_8MixxbR3PSFN0) is a good resource that patients can bring to their PT to help them plan a light exercise regimen.

I would recommend seeing a physiotherapist who is knowledgeable about hypermobility. They'll be able to advise you on any bracing and exercises you'll need based on your daily life, and specific issues. They'll also be able to tell if other parts of your body are involved in causing the pain and instability (often issues with the lower back and hips excerbates ankle and foot pain).

Be sure to let them know that you are wanting to build up your long-term strength and stability, or they may simply release spasms in your muscles that are actually spasming in order to protect your joints. Be prepared for it to take a year or so for your muscles to be strong enough to protect your joints without spasming.

You may want to take a look at this book. While it's written specifically for people with EDS, it's helpful for any of us on the hypermobility spectrum.

You might be interested to know that almost all living things share a set of genes called the hox (also called toolbox) genes. These genes only require small mutations to cause immense changes in body shape.

If you want to learn more, read Sean B. Carroll's Endless Forms Most Beautiful.

http://www.amazon.com/Endless-Forms-Most-Beautiful-Science/dp/0393327795

For the record, that book is in no way about religion.

The fact that so many species share so many genes is actually extremely elegant evidence of common descent. There is also the horizontal gene transfer that someone else already mentioned.

You're so welcome. I'm sorry to hear you've had a similar experience. It is extremely frustrating to be hurting and not getting the help and pain relief you deserve. I totally understand the hypochondriac thing. That was my life for a long time before I got lucky with a few of my doctors and I hope the same happens for you.

My parents thought I was depressed for a really long time before I got my diagnose because I simply just couldn't do things. Don't give up though. I know how insanely expensive it can be.

I don't know if its something you're already doing but going to a chiropractor has helped me with correcting all the little subluxations I get. A word of warning though, you should definitely get someone who is familiar with EDS or at least tell them that you want manual correction only. My insurance covers it but I'm not if yours does. The only other thing that is affordable that I can think of is working through a PT program at home to help stabilize your joints by strengthening your muscles. It's not cheap up front but much cheaper than ongoing physical therapy. This is the book that I reference. https://smile.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880

I hope things start to look up for you. Hang in there.

That's why I added "biologist" in the title. Physicist Sean Carroll very cool, Biologist Sean Carroll also very cool! His book, Endless Forms Most Beautiful, is amazing.


Next time we'll try to invite Physicist Sean Carroll! He might come!

I'm getting this one https://www.amazon.co.uk/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880 but it might not be the only or best one. I heard about the muldowny protocol on reddit, where another person recommended it.

We'll see how well it works

Also, would anyone recommend this book? It's expensive, but I think it could be worth it if it helps.

Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_apa_nldjzbEVWHRD3

Francis Collins was the director of the Human Genome Project. He is a Christian, but (obviously) completely accepts the theory of evolution. His book The Language of Life explains why. His book The Language of God attempts to strike a middle ground between science and religion. It's pretty good, even though I (an atheist) disagree with many of his conclusions.

I enjoyed Endless Forms Most Beautiful by Sean Carroll

I have hEDS, and I don't have the dislocations. I feel things moving around and they stay out of place, but I wouldn't say dislocated.

It's possible you could have the hypermobile type and still not dislocate ( I would assume because that's how I am). I recommend purchasing the book, "Living Life to the Fullest with EDS" and reading on the different types.


https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880

I just want to say I really like this guy. Also check out Endless Forms Most Beautiful.

Maybe check out Mental Wellness in Adults with Down Syndrome

Big fan of Dawkins but one should also read Gould and others mentioned here (read as much as you can and make your own mind up ;-)... i find Sean Caroll's evo-devo stuff really fun to read and i think Dawkins touches on the developments in that field but Caroll (and probably others) get down and dirty in it: http://www.amazon.com/Endless-Forms-Most-Beautiful-Science/dp/0393327795

> genes responsible

do you have any idea how this works?

Both Sagan and Bryson = circle jerk books. Both great books, but still. Here's one I haven't seen on here:


http://www.amazon.com/Endless-Forms-Most-Beautiful-Science/dp/0393060160

I saw that his new book comes out in a few months: https://www.amazon.com/Lifespan-Why-Age_and-Dont-Have/dp/1501191977

>back injuries are not common with HEDS

Disagree. The Muldowney PT book that we all love is written entirely around the idea that SI joint problems are so insanely common with people who have EDS, and that joint is in your lower back. Chapter 1 starts with working on that joint. The entire book is written around the idea of making that problematic joint stronger.

Please buy this book. Back pain sucks.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880

Agreed, the monies wasted on the war machines of this world are vast (all countries, all conflicts, all cold wars scenarios), even th worlds research and development institutions are deeply structured to produce results for the worlds war machines. Do you see any massive funding for the fields of longevity (check out www.reddir.com/r/longevity and also www.sens.org www.fightaging.org and www.mprize.org ) the exploding fields of biotechnology and nanotechnology will enable us to completely reverse all aging processes at the molecular level. Aubrey de gray said that a couple of billions (over 12 years ago) could solve the required research and development to demonstrate a reversal of aging in mice (then humans shortly thereafter), the thing is, we as a species spend a minimum of 2 billions per day on all the worlds militaries combined ( that’s 2000 x 1-million dollars per day)! That’s probably not the only costs as you have to consider all the damage of past wars (20th century wars, 21st century wars as a recent examples), Carl Sagan said that all the wars of the last 2000 odd years have really held us back so much that we should be at a level of a Star Trek society by now (hopefully minus the military aspects even though that’s what makes interesting dramas etc). War game simulations done in the 1980’s by the pentagon during the Cold War world always produce an escalation to nuclear war situation....so the current world wide Cold War environment we find ourselves in is very dangerous as we have now many players who have nukes and different conflicting agendas to consider. There is going to be a very interesting book on aging and the coming revolution of biotechnology and biotechnology breakthroughs, the book is coming out in September:

https://www.amazon.com/Lifespan-Revolutionary-Science-Age-Dont-ebook/dp/B07N4C6LGR