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Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir

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The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure--and became a champion for a new approach to medical research. "An extraordinary memoir . . . It belongs with Atul Gawande's writings and When Breath Becomes Air."--Adam Grant, New York Times bestselling author of Originals David Fajgenbaum, a The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure--and became a champion for a new approach to medical research. "An extraordinary memoir . . . It belongs with Atul Gawande's writings and When Breath Becomes Air."--Adam Grant, New York Times bestselling author of Originals David Fajgenbaum, a former Georgetown quarterback, was nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime. Miraculously, Fajgenbaum survived--only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide. Praise for Chasing My Cure "A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope."--Angela Duckworth, #1 New York Times bestselling author of Grit "[A] remarkable memoir . . . Fajgenbaum writes lucidly and movingly . . . Fajgenbaum's stirring account of his illness will inspire readers."--Publishers Weekly


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The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure--and became a champion for a new approach to medical research. "An extraordinary memoir . . . It belongs with Atul Gawande's writings and When Breath Becomes Air."--Adam Grant, New York Times bestselling author of Originals David Fajgenbaum, a The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure--and became a champion for a new approach to medical research. "An extraordinary memoir . . . It belongs with Atul Gawande's writings and When Breath Becomes Air."--Adam Grant, New York Times bestselling author of Originals David Fajgenbaum, a former Georgetown quarterback, was nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance, the equivalent of a dramatic play to second the game into overtime. Miraculously, Fajgenbaum survived--only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide. Praise for Chasing My Cure "A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope."--Angela Duckworth, #1 New York Times bestselling author of Grit "[A] remarkable memoir . . . Fajgenbaum writes lucidly and movingly . . . Fajgenbaum's stirring account of his illness will inspire readers."--Publishers Weekly

30 review for Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir

  1. 4 out of 5

    Holly

    ...“will” is that extra fight that emerges when there seems to be no more hope. Chasing My Cure: A Doctor’s Race to Turn Hope Into Action is an inspirational memoir that follows a medical student’s harrowing deterioration from healthy athlete to a person with multiple system organ failure. Chasing My Cure reads like a medical thriller and I could not put it down. There is also a love story that I found especially moving. This book is an emotional roller-coaster ride that is a heart-wrenching acco ...“will” is that extra fight that emerges when there seems to be no more hope. Chasing My Cure: A Doctor’s Race to Turn Hope Into Action is an inspirational memoir that follows a medical student’s harrowing deterioration from healthy athlete to a person with multiple system organ failure. Chasing My Cure reads like a medical thriller and I could not put it down. There is also a love story that I found especially moving. This book is an emotional roller-coaster ride that is a heart-wrenching account of a heroic and courageous man’s intense will to live that knows no bounds. David Fajgenbaum is afflicted with Castleman’s disease, described as a cross between cancer and an auto-immune illness. I could no longer just hope that my treatment would work. I could no longer rely on the previous research. I could no longer hope someone else, somewhere would perform research that would lead to breakthroughs that could save my life. If I were to survive again—and to survive long term—I had to get off the sidelines and act. If I didn’t start fighting back to cure this disease, no one else would and I would soon die. Frustrated with the lack of an effective treatment, David Fajgenbaum took it upon himself to find a cure. He began by studying his charts and testing blood samples. He also reached out to other patients, physicians and researchers and discovered that work was being done in silos, with no or little communication or collaboration. For example, no one knew if something didn’t work because such occurrences do not make it into medical journals. With the benefit of a newly acquired M.B.A., Dr. Fajgenbaum forged a new path and turned the current approach to scientific inquiry and research on its head, with the goal of making it more efficient and effective. He established the Castleman Disease Collaborative Network, which brought the silos together and centralized as well as integrated all the learning and data. Dr. Fajgenbaum successfully developed diagnostic criteria with the result that people could be more quickly diagnosed compared to the months it took in his case. This was also a major victory for drug research and clinical trials because it would remove patients that were not diagnosed correctly, thereby making the drug-testing data more reliable. In his newly created framework for scientific research, he crowdsourced ideas and recruited the best and most competent researchers to investigate them. If only we could clone Dr. Fajgenbaum to head up research for all rare diseases. Hopefully others will adapt his framework and advance their work in a more collaborative system.

  2. 5 out of 5

    Elyse Walters

    Audiobook....read by the author/doctor David Fajenbaum This non-fiction/memoir was gripping-fascinating-very engaging to listen to. David Fajenbaum, nicknamed ‘The Beast’ in medical school, with his unmatched stamina, drive, work ethics, diligence, and his insurmountable commitment to being a dedicated doctor who really wanted to help and heal his patients.... DAVID BECAME THE PATIENT.....( overnight horrific sickness).... ....with a very rare disease called ‘Castleman Disease’. (doctors didn’t kno Audiobook....read by the author/doctor David Fajenbaum This non-fiction/memoir was gripping-fascinating-very engaging to listen to. David Fajenbaum, nicknamed ‘The Beast’ in medical school, with his unmatched stamina, drive, work ethics, diligence, and his insurmountable commitment to being a dedicated doctor who really wanted to help and heal his patients.... DAVID BECAME THE PATIENT.....( overnight horrific sickness).... ....with a very rare disease called ‘Castleman Disease’. (doctors didn’t know what he had - other than every organ in his body was shutting down). I had never heard Castleman’s Disease. It’s extremely deadly, and rare. It acts like a cross between cancer and an autoimmune disorder. I spent some time visiting our friend, Google, reading up on disease. It can have similar characteristics to other infectious diseases such as Epstein-Barr, tuberculosis, lupus, rheumatoid arthritis, lymphoma, etc. From the very start of this audiobook....( went in blind), it had my attention. Within seconds I could feel how real and present David Fajenbaum was. My god....the guy was ‘likable’!!! He speaks from his heart....real & humble.....( yet, we are sure he is tall, dark, and handsome, and bright as a whip). OH MY GOD....Ha, he really ‘is’ tall, dark, slim, and handsome. ( I had no idea of what he looked liked until after finishing this audiobook)... Of course he was the former Georgetown quarterback,.....(just a little athletic)........ and.... a great friend, loyal son, outstanding student.....and an all around mensch of a man.....( husband now too) and a wonderful storyteller...... AT LEAST IN TELLING *THIS* story! It’s easy to get hooked - fabulous human - important - interest story! We know from the beginning that Fajenbaum survived....( at least I was 90% sure anyway)....but what I didn’t know ....and I won’t spill the beans here either.....is ‘what’ his actual life-long condition was going to be...a chronic issue to deal with ‘forever’....and ‘manage’?.... ....[at least not dead]....or would he be completely healed? And what about others who have it? Just learning about Castleman’s disease was captivating... ......shocking bodily breakdowns....where every second counted ...he was REALLY DYING....and because of the body fluids....he looked like a very pregnant woman.....THE PHOTOS were so surreal. THIS STORY IS INCREDIBLE; eye opening into medical research! I kinda - ha- now - have a crush on DAVID FAJENBAUM. HE IS AN INCREDIBLE GIFT to others. There are a few inspiring YouTubes of him speaking. Worth watching. Nobody who reads this book will regret it!!! It can being tears to your eyes!!! Emotional....educational.... phenomenal!,, David Fajenbaum is A BEAST OF A HUMAN BEING...as in remarkable! ................gives me hope for our global pandemic!

  3. 4 out of 5

    Cheryl

    David Fajgenbaum seemed to have a charmed life. He had a loving and supportive family and a close knit group of friends. He’d been the state champion weight lifter in high school, was the quarterback of the Georgetown University football team, had graduated magna cum laude, and was dating the girl of his dreams. But when his mother died of brain cancer, his grief was overwhelming. He decided that he would pursue a career in medicine and help find a cure for cancer. Then fate dealt him another bl David Fajgenbaum seemed to have a charmed life. He had a loving and supportive family and a close knit group of friends. He’d been the state champion weight lifter in high school, was the quarterback of the Georgetown University football team, had graduated magna cum laude, and was dating the girl of his dreams. But when his mother died of brain cancer, his grief was overwhelming. He decided that he would pursue a career in medicine and help find a cure for cancer. Then fate dealt him another blow when, during his second year of medical school, he was suddenly hospitalized with a rare illness that has no cure. In fact, very little information was available for doctors to help treat him. He was experiencing extreme pain and multiple organ failure. In this riveting and powerful memoir, doctor David Fajgenbaum tells his remarkable story. His incredible will to survive propelled him to literally take charge of his care. He survived his initial bout with Castleman’s disease only to relapse more than five times in a three year period. He began to relentlessly search for a cure. His approach to research and collaboration has brought some significant improvements in the treatment of the disease, and has brought hope to sufferers of Castleman’s. To this day, Dr. Fajgenbaum lives with the prospect of relapse and the shadow of death from Castleman’s disease. I could not put this book down! It is a story of courage, love of family, enduring friendships, perseverance against all odds, and the determination to make the most of life, to make life better for others, and to be invincible in hope. Chasing My Cure is an outstanding, inspiring book that you won’t soon forget. Thank you to Net Galley, Random House Publishing Group - Ballantine Books, and Dr. David Fajgenbaum for giving me the opportunity to read this amazing and unforgettable book.

  4. 4 out of 5

    India M. Clamp

    Dr. Fajgenbaum is expository and inside we meet familiar friends named Borat, multiple organ failure and his earned epithet of “Beast” (weightlifting accolades during his football episode at Georgetown University). Then the nefarious downward spiral ensues with being rushed to the emergency room---bloated like a balloon man with 70 lbs. of fluid. Trying cyclosporine as hopes fade to complete medical school and marry Caitlin. “Technically I am disabled...diagnosed with the hyperfocus variant of a Dr. Fajgenbaum is expository and inside we meet familiar friends named Borat, multiple organ failure and his earned epithet of “Beast” (weightlifting accolades during his football episode at Georgetown University). Then the nefarious downward spiral ensues with being rushed to the emergency room---bloated like a balloon man with 70 lbs. of fluid. Trying cyclosporine as hopes fade to complete medical school and marry Caitlin. “Technically I am disabled...diagnosed with the hyperfocus variant of attention deficit/hyperactivity disorder...(my dad, the formidable orthopedic surgeon) full of opinions and stories---both of which he will share with you.” ---David Fajgenbaum, MD, MBA, MSc, FCPP David stands tall at 6 foot 3” with hands familiar to holding footballs, Caitlin, his mom and patients. Then something red and inflamed demands attention looks like red birthmarks yet to an erudite Professor like David they are strawberry hemangiomas popping up all over his chest. Fatigue, tiredness and discovery of Dr. Fajgenbaum resting in between patients. Findings of enlarged lymph nodes. Could it be lymphoma? Optimism erupts in the form of a diagnosis from the Mayo Clinic (Minnesota). Finally, we have the truth. “I think I am dying” is not an untoward statement exclaimed by Dr. Fajgenbaum to a disease currently affecting fewer than 8,000 people domestically and for David its name is multicentric Castleman's disease. Sirolimus helped catapult his immune system to homeostasis in its angelic benefits. Six years have passed, now Dr. Fajgenbaum is counseling a patient diagnosed with the same rare disease. Extraordinary homage to human resilience. Read.

  5. 5 out of 5

    Julie

    “Chasing My Cure” is an amazing story of one Doctor’s race against time to find a treatment for Castleman Disease before it takes his own life. It is a story of courage and perseverance even when the odds didn’t work in his favor. And more than just one man’s story it speaks to the practice of medicine, the state of medical research, the limitations of our current system as well as the hope of that system and the difference one person truly can make. It is a thoughtful and optimistic book but do “Chasing My Cure” is an amazing story of one Doctor’s race against time to find a treatment for Castleman Disease before it takes his own life. It is a story of courage and perseverance even when the odds didn’t work in his favor. And more than just one man’s story it speaks to the practice of medicine, the state of medical research, the limitations of our current system as well as the hope of that system and the difference one person truly can make. It is a thoughtful and optimistic book but does not ignore the many barriers placed before those caught in a complicated and often confusing medical system. Ultimately though it is a story of hope not despair-a story of the strength and wisdom that comes from family and friends and doctors that care. It is a book you are not going to want to miss. I was honored to receive a free advanced copy of this book from NetGalley and the Publisher, Random House Publishing Group - Ballantine in exchange for an honest review.

  6. 5 out of 5

    Tzipora

    Wow! Chasing My Cure was in interesting read I’m still trying to wrap my head around. I have multiple rare diseases (or perhaps one overarching and yet unnamed, this tends to be my personal theory) and while very different from the author’s my own are also very life threatening and life limiting. As a result, I find myself drawn to medical and illness related memoirs and this one really stood out for me. I think I like these sorts of books because I’m always looking for people who are like me, w Wow! Chasing My Cure was in interesting read I’m still trying to wrap my head around. I have multiple rare diseases (or perhaps one overarching and yet unnamed, this tends to be my personal theory) and while very different from the author’s my own are also very life threatening and life limiting. As a result, I find myself drawn to medical and illness related memoirs and this one really stood out for me. I think I like these sorts of books because I’m always looking for people who are like me, who have ventured deep within the kingdom of the sick and found the words to describe experiences that aren’t ever easy to describe. In this book, our author, David, is in medical school when he gets sick so he has a deep knowledge base and an intellectual understanding of illness that as he finds out, doesn’t remotely prepare one for how it is to actually be the one in the hospital bed suffering and fighting for your life. David was also unusually fit and athletic and from a sports based background. I ended up really enjoying his many sports based metaphors to describe his experiences because they knew were new to me yet managed to make sense (and I’m someone so deeply entrenched in the arts I ended up at a fine and performing arts school growing up that didn’t even have a gym or sports teams!). I think it speaks to the author’s strength as a writer that even I could relate to and understand his metaphors! I also especially appreciated the point of view, someone who like me had illness come crashing down at them in the prime of their life, who has had their toes over the edge of mortality, and who must live daily with an awareness of their lifespan that most 20 & 30-somethings don’t. Yet to marvel at times at our very survival. David never shies away from all the complex realities of going from such youthful health to near death. It’s painful to read how he pushes away loved ones for fear of them seeing and remembering him so sick. But all of this is so real, and the type of things I think sometimes get rushed over in other disease memoirs. And unlike cancer memoirs or other such stories of illness, the thing about rare and chronic diseases is there is no cure and it doesn’t go away. You live everyday knowing you probably do not have much time. It’s not often I find people who can relate and rarer still for me to read about it, and to see it told so well. I think it’s very interesting to read how being in medical school and having that background shapes the author’s experiences and his approach to coping with his disease. He definitely has a lot more privilege than many of us in the rare disease world, especially those of us who developed our illnesses at a young age, prior to finishing degrees, starting careers, or finding partners and starting families. That privilege is important to discuss because I’m unsure everyone could do all David has. Yet with that said, I find it truly commendable that he took his privilege and the uniqueness of his experiences and background as a medical student and then doctor, and started a foundation for his disease, Castleman’s, that not only helped bring patients together and support them when there was such limited literature or research out there for those patients to even know what to expect, but he also goes on to do a great deal of promising research and to even find a treatment to help keep his disease at bay. It’s truly stunning what he is able to do and not just for himself or even other Castleman’s disease patients, but to kind of shake up the research world and how rare diseases are studied. Because the author comes from a medical background I would also mention this book may not be for everyone. It does go quite in depth into medical details and specifics. For rare disease patients, even those of without formal medical training, we do often have to become our own experts and I didn’t personally find the medical detail off-putting nor do I think other patients or medical folks will. I do think it might be a bit heavy for a casual reader, however, and feel that’s important to mention. Dr. David Fajgenbaum tells and is living an incredible story, one that is well worth reading. And more than general inspirational novel, I think the book’s greatest strength is showing the rest of us unlucky enough to also have rare diseases (something that collectively is not rare at all) how much power we have to network and connect and fight for our diseases as well. I would most especially recommend this book to other patients and also to doctors and researchers focused on rare disease. I genuinely look forward to seeing what Dr. Fajgenbaum accomplishes in the future and wish him as many full years as possible. Thank you to Net Galley and Random House for allowing me access to an advanced review copy of this book and a special thanks to the author, himself, for inspiring this rather jaded rare disease patient as well!

  7. 5 out of 5

    Nancy

    While inspiring, this is not a book to read for enjoyment or escapism. Heavy on technical medical terminology and treatments so most likely of greatest interest to those suffering from a "rare" disease and/ or considering participating in a trial treatment. The rest of us have to hope that neither we nor anyone we know will never have to undergo the medical traumas the author did while chasing his cure. While inspiring, this is not a book to read for enjoyment or escapism. Heavy on technical medical terminology and treatments so most likely of greatest interest to those suffering from a "rare" disease and/ or considering participating in a trial treatment. The rest of us have to hope that neither we nor anyone we know will never have to undergo the medical traumas the author did while chasing his cure.

  8. 4 out of 5

    Mbgirl

    For its incredible telling, for its miraculous course, for the author’s indomitable fortitude,4 stars. The writing was not that wonderful for me, but then again, ‘it’s not why I chose to read it. No matter how Fejgenbaum puts it, I struggled the whole length of the book with what seemed like an odd pride that I cannot exactly describe. His choices were at times frustrating. The journey that he continues to embark upon against IMDC is admirable, so brave, so relentless. Powerful story of what motiva For its incredible telling, for its miraculous course, for the author’s indomitable fortitude,4 stars. The writing was not that wonderful for me, but then again, ‘it’s not why I chose to read it. No matter how Fejgenbaum puts it, I struggled the whole length of the book with what seemed like an odd pride that I cannot exactly describe. His choices were at times frustrating. The journey that he continues to embark upon against IMDC is admirable, so brave, so relentless. Powerful story of what motivates a human, what fight, determination, and mettle really look like for those rare warriors out there. Fine mind, once fine body, now being saved by the fine mind. And a wholly otherworldly passion. Glad he became a father in 2018.

  9. 5 out of 5

    Cindy

    What an inspiration! The author is clearly a brilliant scientist, doctor and researcher who is also a great storyteller and he has the rare knack of making complex topics understandable for the lay reader. But even if you choose to skim over the more technical science you will still get so much from this book. I read it in one day (guess I’ll be doing my client work over the weekend;). After reading this book you’ll never forget the importance of turning your hope into action. Thank you to Netgal What an inspiration! The author is clearly a brilliant scientist, doctor and researcher who is also a great storyteller and he has the rare knack of making complex topics understandable for the lay reader. But even if you choose to skim over the more technical science you will still get so much from this book. I read it in one day (guess I’ll be doing my client work over the weekend;). After reading this book you’ll never forget the importance of turning your hope into action. Thank you to Netgalley and Ballantine Books for providing me with and early release of this book in exchange for an honest and fair review.

  10. 5 out of 5

    Hailey

    I truly enjoyed this book. I read it in the span of a day. The writing is compelling and humorous, despite discussing a situation that is anything but. Those who know me know that I am a total biology nerd, which is part of the reason why I loved this book so much. With that said, I am an immunology & infectious disease major and this book reminded me of why I chose this field to focus in. For people who may not have as much of a biology background as myself, I feel like this is a very easy read. I truly enjoyed this book. I read it in the span of a day. The writing is compelling and humorous, despite discussing a situation that is anything but. Those who know me know that I am a total biology nerd, which is part of the reason why I loved this book so much. With that said, I am an immunology & infectious disease major and this book reminded me of why I chose this field to focus in. For people who may not have as much of a biology background as myself, I feel like this is a very easy read. The author does a wonderful job of breaking down relatively complex situations and bodily features into something that is easy to comprehend. I also loved all of the analogies and felt that they were very fitting. I’m so happy I read this book and can honestly say that I have fallen a bit more in love with this field of biology than I had been before.

  11. 5 out of 5

    Natalie Herr

    This book is a rollercoaster of a memoir! It is a true story, an amazing look into the world of rare disease patients. The author is both patient and doctor, researcher and test case. I learned a lot about Castleman Disease and medical research in an accessible way (aka- the medical stuff wasn’t too over my head). I also got an intimate look into the heart and mind of a man well acquainted with death and how that changed the way he lives. Get this book!! *Full disclosure: The author is my cousin’ This book is a rollercoaster of a memoir! It is a true story, an amazing look into the world of rare disease patients. The author is both patient and doctor, researcher and test case. I learned a lot about Castleman Disease and medical research in an accessible way (aka- the medical stuff wasn’t too over my head). I also got an intimate look into the heart and mind of a man well acquainted with death and how that changed the way he lives. Get this book!! *Full disclosure: The author is my cousin’s husband.❤️ He’s as genuine and inspiring in person as he is in his writing.

  12. 4 out of 5

    Heather Bennett

    Chasing My Cute is a eye opening experience this young doctor had to go through fighting Castleman disease. His own struggles fighting it and trying to find a cure. A very interesting and enlightening book.

  13. 4 out of 5

    Nicole Fredericks

    I enjoyed hearing the author’s harrowing story—what a wild ride he has had! I struggled with some of the more technical medical writing and found myself skimming. Overall, an interesting and thought provoking book.

  14. 5 out of 5

    Stephanie

    “Hope is a force, but it isn’t a superpower.” - David F (favorite quote) David has a tremendous life story.... this book covers the years that he was in Med school and diagnosed with rare autoimmune condition: Castleman (IMCD) disease. I don’t know if his story would have interested me if I weren’t rocking THREE really mean autoimmune diseases myself. But I am, so it did. Being a doctor... ya can’t be surprised that his memoir reads like a medical journal. He’s gets very deep and thoroughly into t “Hope is a force, but it isn’t a superpower.” - David F (favorite quote) David has a tremendous life story.... this book covers the years that he was in Med school and diagnosed with rare autoimmune condition: Castleman (IMCD) disease. I don’t know if his story would have interested me if I weren’t rocking THREE really mean autoimmune diseases myself. But I am, so it did. Being a doctor... ya can’t be surprised that his memoir reads like a medical journal. He’s gets very deep and thoroughly into the details and mechanics of his disease, the immune system, and the options for treatment that he searches for and experiments with. He does not take it easy at all for the layperson with the medical jargon. I can imagine that some readers might become extremely bored with some of the details he describes on the medical part. I didn’t mind and followed along with him because a lot of the functions of his disease match the disease I’ve been diagnosed with. Many of the medications and treatments he tried I have also tried. I enjoyed that, mixed in all the medical, there is a beautiful narrative about the people who loved him through. The family and friends who rallied...they didn’t wait to be asked, they just acted. The solid theme from beginning to end that struck me was that he fought this disease mainly for the ‘love of his life’. It was something to hear that his mind was always on how it affected her. I totally related to the way that he pushed her away to protect her, but then decided he couldn’t do that; she was his reason. He had to fight this so he could “marry Caitlin and build a life with her.” He has an awesome theory that I related to about disease research... he calls it the Santa Claus idea. It hit the nail on the head for me. We like to think that brilliant medical experts/ researchers are in labs all over the world working on a cure to all of our rare diseases. And that the cures will be delivered to all good boys and girls. Dave says that isn’t true. Dang. It dawned on me that I believe that... just be patient and good and those good men and women will find a cure... Well written, David. And well fought/ fighting and well lived.

  15. 4 out of 5

    Ben

    This should be an inspiring story, but I never quite connected with Fajgenbaum, maybe because of his complete single-mindedness and his incredible luck and privilege. I hope it inspires others, though, because he seems to be accomplishing real change. > Hope cannot be a passive concept. It's a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action > I now realize that very few people my age are lucky enou This should be an inspiring story, but I never quite connected with Fajgenbaum, maybe because of his complete single-mindedness and his incredible luck and privilege. I hope it inspires others, though, because he seems to be accomplishing real change. > Hope cannot be a passive concept. It's a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action > I now realize that very few people my age are lucky enough to experience this security, the sure knowledge that she would be with me through thick and thin, fatness and baldness, through terrible times, and more. > There are approximately seven thousand rare diseases and 350 million people afflicted by them worldwide. One in ten Americans has a rare disease; half of these are children, and about 30 percent of these children will die before their fifth birthday. > It became even clearer to me that the approach in biomedical research of let's hope the right researcher with the right skill set applies to perform the right study at the right time was backward. > Few incentives exist for pharmaceutical companies to invest in expensive clinical trials to determine if an already FDA-approved drug may be effective for a rare condition. And when clinical trials are performed, the data are rarely submitted to the FDA for approval in this new use. The whole process is just too expensive and time-consuming. And there are potential downsides: If the drug elicits new side effects in the trial for the rare disease, its approval for the original disease is put at risk.

  16. 5 out of 5

    Michelle Arredondo

    This truly is a powerful memoir. One that will stay with me for awhile. I was so gripped by this book that I passed my copy on to my cousin that has been a nurse for many years. I am hoping that she loves it enough to recommend this to everyone she knows at the hospitals that she works back and forth at. Dr. Fajgenbaum is not only a remarkable and heroic and inspiring doctor. He is also a brilliant writer and storyteller of his life. I was amazed at how good this book was. His voice is raw...can This truly is a powerful memoir. One that will stay with me for awhile. I was so gripped by this book that I passed my copy on to my cousin that has been a nurse for many years. I am hoping that she loves it enough to recommend this to everyone she knows at the hospitals that she works back and forth at. Dr. Fajgenbaum is not only a remarkable and heroic and inspiring doctor. He is also a brilliant writer and storyteller of his life. I was amazed at how good this book was. His voice is raw...candid...humble...informative....and intelligent. It's really hard to put this book down, even harder to walk away and do something else and not stop and give this book a few moments of your time. I kept going back to his life. I was driving with my husband to the grocery story and I found myself thinking of Dr. Fajgenbaum's story. I was at work and instead of listening to my music in my earbuds I was thinking about this book. That's the impact this story has. I was in tears at the end. Thanks to goodreads and to Author and Dr. David Fajgenbaum for my copy won via giveaway. I received. I read. I reviewed this book honestly and voluntarily.

  17. 5 out of 5

    Sylvia Ward

    4.5/5 stars. This is a must-read for anyone pursuing jobs in medicine, and for everyone dealing with a rare disease. David Fajgenbaum is author, med student, doctor, researcher, patient and guinea pig for the rare Castleman Disease. Well-written; it’s neither clinical nor maudlin as the memoir divulges the unknown world of clinical trials and the surprisingly unscientific approach to treatment protocols. I was rooting for Dr. Fajgenbaum from start to finish. I think it’s important for everyone t 4.5/5 stars. This is a must-read for anyone pursuing jobs in medicine, and for everyone dealing with a rare disease. David Fajgenbaum is author, med student, doctor, researcher, patient and guinea pig for the rare Castleman Disease. Well-written; it’s neither clinical nor maudlin as the memoir divulges the unknown world of clinical trials and the surprisingly unscientific approach to treatment protocols. I was rooting for Dr. Fajgenbaum from start to finish. I think it’s important for everyone to realize that medical treatment is not an exact science, and patients and/or their family members need to proactively advocate for information about all treatment options. As an example of courage, tenacity, and resiliency, I strongly recommend this informative story. Let this be a lesson that motivates you to take an active role in helping yourself, loved ones, or friends who are facing a rare disease. Thank you Ballantine Books for the opportunity to read and review this advanced copy.

  18. 5 out of 5

    Lori

    I received a copy of "Chasing my Cure" from the goodreads, giveaway. David Fajgenbaum was in medical school when he came down with a mysterious illness. One that had him in the ICU close to death. His lymph nodes swelled, he gained over 50 pounds in fluid. It took a lot of testing and he nearly died but was eventually diagnosed with a unknown disease called " Casltleman's disease" after weeks in the hospital he managed to start to get better. From this day on he devoted his life to researching C I received a copy of "Chasing my Cure" from the goodreads, giveaway. David Fajgenbaum was in medical school when he came down with a mysterious illness. One that had him in the ICU close to death. His lymph nodes swelled, he gained over 50 pounds in fluid. It took a lot of testing and he nearly died but was eventually diagnosed with a unknown disease called " Casltleman's disease" after weeks in the hospital he managed to start to get better. From this day on he devoted his life to researching Castleman's disease. He had four more almost deadly flareups and used himself as research. His memoir discusses what he is learning about his disease and what can be done for future patients. An interesting read.

  19. 4 out of 5

    Stephanie

    Dr. Fajgenbaum's story was that of a medical mystery meet love story meet the underdog wins story. What an amazing story of a man knocked down by disease, but then launched into battle against that disease for himself as well as others. Knowing far too many people with rare diseases, I'm grateful to learn of his work and how he has shaken things up for Castleman's and hope how they've done things sends shock waves through rare disease research to help many patients worldwide. Dr. Fajgenbaum's story was that of a medical mystery meet love story meet the underdog wins story. What an amazing story of a man knocked down by disease, but then launched into battle against that disease for himself as well as others. Knowing far too many people with rare diseases, I'm grateful to learn of his work and how he has shaken things up for Castleman's and hope how they've done things sends shock waves through rare disease research to help many patients worldwide.

  20. 5 out of 5

    Josephine Sorrell

    This is the amazing memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure, despite knocking on heaven’s door many times. David Fajgenbaum, was a Georgetown quarterback,nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors This is the amazing memoir of a young doctor and former college athlete diagnosed with a rare disease who spearheaded the search for a cure, despite knocking on heaven’s door many times. David Fajgenbaum, was a Georgetown quarterback,nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for a second chance. And it was granted and granted and........ Miraculously, Fajgenbaum survived, only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle this monster. More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment  he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, all collide. I also became a little weary of all the medical discussions and, maybe I did a little skimming to-get to the meat of his life.

  21. 5 out of 5

    Alicia

    An insightful look at battling diseases that have difficulty being pinpointed because of their insidious ness and makeup, so when one of these diseases hits an up and coming doctor who had also had his mother die of brain cancer when he was in college, he was ready to put science in his corner to figure it out. He ends up with a name and marker number and longer periods of remissions that will likely have an impact not only on his disease but others. A mix of other medical biographies of this sor An insightful look at battling diseases that have difficulty being pinpointed because of their insidious ness and makeup, so when one of these diseases hits an up and coming doctor who had also had his mother die of brain cancer when he was in college, he was ready to put science in his corner to figure it out. He ends up with a name and marker number and longer periods of remissions that will likely have an impact not only on his disease but others. A mix of other medical biographies of this sort, it’s a good read.

  22. 4 out of 5

    Jan Plain

    3.8 stars. A well told story of a young man’s battle with a horrible disease. I was amazed by the number of times he was at “death’s door” only to pull through yet again. My only complaint with the book was that for me it was a bit too detailed on the scientific end, but I recognize that people who have this disease want to know all that they can about it because it is so rare.

  23. 4 out of 5

    Jillian Vincent

    Such an inspiring read. David’s perspective will make you take hold of the moments you have in order to benefit someone else. Even though I have never heard of this disease before, I found this utterly fascinating. I learned so much about rare diseases and how they are currently treated, but also I learned how to take active hope in a situation. Recommend to all.

  24. 5 out of 5

    Amanda Harman

    It was really comforting to have this book to read right after getting a Castleman’s diagnosis. I’ve never heard of this disease before, so hearing a first hand account was way more helpful than a google hole.

  25. 4 out of 5

    Livia Komosa

    I really enjoyed this book. I found it fascinating how the medical diagnosis process works. It is an interesting perspective from a person who is both a patient and doctor. I learned a lot.. some of it scary. It is not a comforting thought to think that your doctor doesn't know everything. (I mean you know that deep down, but to have it confirmed is something else) I hope Dr. Fajgenbaum continues to stay in remission and continue looking for answers. The medical field needs more like him. I really enjoyed this book. I found it fascinating how the medical diagnosis process works. It is an interesting perspective from a person who is both a patient and doctor. I learned a lot.. some of it scary. It is not a comforting thought to think that your doctor doesn't know everything. (I mean you know that deep down, but to have it confirmed is something else) I hope Dr. Fajgenbaum continues to stay in remission and continue looking for answers. The medical field needs more like him.

  26. 4 out of 5

    Margaret

    I think that I would have enjoyed reading this more if I was in the medical field. I have always been interested in health but the details of the author's description of his rare disease lost me at times. This is an important book for those who are dealing with this particular illness. I think that I would have enjoyed reading this more if I was in the medical field. I have always been interested in health but the details of the author's description of his rare disease lost me at times. This is an important book for those who are dealing with this particular illness.

  27. 5 out of 5

    Lisa

    This was a very interesting book, but it does get a little bogged down near the end amidst all the business and in-depth medical info.

  28. 5 out of 5

    Pragya

    2.5 stars

  29. 4 out of 5

    Heidi Larson

    It's interesting to listen to Dr. Fajgenbaum talk about his fascination with western medicine while looking for alternative answers under the existing constructs. It's interesting to listen to Dr. Fajgenbaum talk about his fascination with western medicine while looking for alternative answers under the existing constructs.

  30. 4 out of 5

    Erin Matson

    Rating a memoir of someone who survived an unknown fatal disease and brought together people from the patient and medical community to advance treatments and understanding feels odd because, I hope obviously, David Fajgenbaum gets five stars for his achievements. The book itself is good but probably more exciting for someone who either is in the medical field or has personal experience with Castleman disease.

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