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Chasing My Cure: A Doctor's Race to Turn Hope into Action
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.
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.
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.
256 pages, Hardcover
First published September 10, 2019
349 people are currently reading
6340 people want to read
About the author
David Fajgenbaum
4 books61 followersDavid Fajgenbaum, MD, MBA, MSc, is a graduate of Georgetown University, the University of Oxford, the University of Pennsylvania, and the Wharton School. An assistant professor of medicine at the University of Pennsylvania and the associate director for the Orphan Disease Center, he is cofounder and executive director of the Castleman Disease Collaborative Network, as well as the cofounder of the National Students of Ailing Mothers and Fathers Support Network. Dr. Fajgenbaum has been recognized with multiple awards, including the Forbes “30 Under 30” for healthcare and the RARE Champion of Hope Award for science. He has been profiled by major media outlets such as The New York Times, Forbes, Science, Reader’s Digest, and the Today show. He lives in Philadelphia with his wife, Caitlin, and their daughter, Amelia.
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October 15, 2019
...“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.
May 28, 2020
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!
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!
July 12, 2019
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.
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.
March 2, 2020
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.
“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.
May 9, 2019
“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.
December 17, 2021
3,5 steluțe. Credeam că îmi va fi ușor să citesc această carte, pentru că m-am uitat la seriale despre medici și când eram mică, fără să închid ochii la vederea procedurilor medicale, dar și pentru că nu stau prea bine la capitolul ,,empatie" față de oameni necunoscuți. Cu toate acestea, a trebuit să iau câteva pauze, când autorul descria durerile pe care a fost nevoit să le suporte, dar și suferința familiei lui, de la care și-a luat rămas-bun de cinci ori, crezând că va muri. A fost o lectură surprinzător de emoționantă, uneori chiar răvășitoare, alteori optimistă, și nu în puține dăți m-a făcut să reflectez asupra vieții și a puterii pe care o avem asupra viitorului nostru, în ciuda momentelor când pare că am pierdut controlul asupra lui.
Realizările lui sunt excepționale și nu rețin să mai fi admirat cu desăvârșire un om după ce i-am citit cartea, așa cum mi s-a întâmplat în acest caz, dar nu am considerat că este o lectură motivațională. Da, te învață să nu îți pierzi speranța și să îți canalizezi ultimele forțe în găsirea unei soluții, dar autorul, ca mulți alții care scriu astfel de cărți, a omis să menționeze ceva: banii. Toată ambiția lui ar fi fost irelevantă, iar el ar fi ajuns o simplă cifră trecută pe un act uitat într-un sertar, dacă nu ar fi avut relații, bani și resurse de toate felurile, care i-au facilitat drumul. Fără bani, care i-au permis inclusiv accesul la medici renumiți, nu ar fi putut să se plimbe dintr-o țară în alta, să consulte diverși specialiști și așa mai departe. Abia ar fi putut convinge infirmiera să îi schimbe așternuturile murdare de la pacientul anterior...
Experiența lui poate fi cu adevărat utilă celor care se confruntă cu boli adeseori fatale sau doar cu o situație mai dificilă, dar, dacă vorbim doar despre primul caz, ar putea fi și frustrantă pentru că dorința de a trăi și a lupta pentru orice zi în plus nu este suficientă decât în prea puține contexte. Oricum, povestea este cu siguranță una memorabilă. Recenzia aici: https://bit.ly/32dWY4T.
,,Când te îmbolnăvești, este drăguț să vezi că oamenii se poartă frumos cu tine. Este minunat când oamenii au grijă de tine și-ți aduc alinare. Când ești foarte, foarte bolnav, nu mai este mereu... așa de drăguț. Te temi că fac ceea ce fac pentru tine dintr-un simț al datoriei sau de teama iminentei tale morți. Sunt convins că cei mai mulți dintre noi nu ne putem explica motivele pentru care o facem, chiar dacă încercăm; pur și simplu facem ceea ce facem pentru că suntem impresionați. Dar, ca beneficiar ale acestei amabilități sau atenții, începi să-ți faci griji în legătură cu ce ar fi făcut oamenii în absența stării tale. Știi că ar rămâne ei înșiși, da, însă ei reacționează față de tine în prezența bolii tale. Asta înseamnă că tu nu mai ești doar tu, persoana alături de care s-ar simți bucuroși sau furioși, pe care ar putea să o îmbrățișeze sau la care ar putea să țipe în împrejurări diferite (care țin de sănătate). În schimb, tu ești, acum și poate pentru totdeauna, o persoană bolnavă. Și asta înseamnă că ceea ce sunt oamenii dispuși să facă pentru tine sau indiferent în ce mod ar putea ei să-și dorească să se sacrifice, se bazează acum - conștient sau nu-, cel puțin un pic, pe boala ta.''
Realizările lui sunt excepționale și nu rețin să mai fi admirat cu desăvârșire un om după ce i-am citit cartea, așa cum mi s-a întâmplat în acest caz, dar nu am considerat că este o lectură motivațională. Da, te învață să nu îți pierzi speranța și să îți canalizezi ultimele forțe în găsirea unei soluții, dar autorul, ca mulți alții care scriu astfel de cărți, a omis să menționeze ceva: banii. Toată ambiția lui ar fi fost irelevantă, iar el ar fi ajuns o simplă cifră trecută pe un act uitat într-un sertar, dacă nu ar fi avut relații, bani și resurse de toate felurile, care i-au facilitat drumul. Fără bani, care i-au permis inclusiv accesul la medici renumiți, nu ar fi putut să se plimbe dintr-o țară în alta, să consulte diverși specialiști și așa mai departe. Abia ar fi putut convinge infirmiera să îi schimbe așternuturile murdare de la pacientul anterior...
Experiența lui poate fi cu adevărat utilă celor care se confruntă cu boli adeseori fatale sau doar cu o situație mai dificilă, dar, dacă vorbim doar despre primul caz, ar putea fi și frustrantă pentru că dorința de a trăi și a lupta pentru orice zi în plus nu este suficientă decât în prea puține contexte. Oricum, povestea este cu siguranță una memorabilă. Recenzia aici: https://bit.ly/32dWY4T.
,,Când te îmbolnăvești, este drăguț să vezi că oamenii se poartă frumos cu tine. Este minunat când oamenii au grijă de tine și-ți aduc alinare. Când ești foarte, foarte bolnav, nu mai este mereu... așa de drăguț. Te temi că fac ceea ce fac pentru tine dintr-un simț al datoriei sau de teama iminentei tale morți. Sunt convins că cei mai mulți dintre noi nu ne putem explica motivele pentru care o facem, chiar dacă încercăm; pur și simplu facem ceea ce facem pentru că suntem impresionați. Dar, ca beneficiar ale acestei amabilități sau atenții, începi să-ți faci griji în legătură cu ce ar fi făcut oamenii în absența stării tale. Știi că ar rămâne ei înșiși, da, însă ei reacționează față de tine în prezența bolii tale. Asta înseamnă că tu nu mai ești doar tu, persoana alături de care s-ar simți bucuroși sau furioși, pe care ar putea să o îmbrățișeze sau la care ar putea să țipe în împrejurări diferite (care țin de sănătate). În schimb, tu ești, acum și poate pentru totdeauna, o persoană bolnavă. Și asta înseamnă că ceea ce sunt oamenii dispuși să facă pentru tine sau indiferent în ce mod ar putea ei să-și dorească să se sacrifice, se bazează acum - conștient sau nu-, cel puțin un pic, pe boala ta.''
September 1, 2019
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!
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!
January 8, 2020
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.
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.
May 11, 2019
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.
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.
October 10, 2019
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.
May 1, 2022
“In esenta, aceasta este o poveste despre moarte, din care sper sa invatati despre viata.”
“Boala te face diferit. In feluri pe care le simti repede ca fiind nedrepte.”
“Cineva trebuia sa transforme speranta in actiune, pentru a transforma aceste lucruri in realitate. Daca tu nu o faci, de multe ori n-o va face nici altul.”
In cautarea vindecarii este cartea de memorii a unui medic care, de la o varsta frageda, s-a confruntat cu o boala rara, necrutatoare, denumita boala Castelman, care se manifesta ca o combinatie intre cancer si tulburare autoimuna. Boala l-a lovit din plin si pe neasteptate pe cand David studia in cadrul facultatii de medicina, venind ca un soc la numai cativa ani dupa moartea mamei sale, aceasta pierzand lupta cu cancerul.
Lectura este sensibila si are capacitatea de a atinge cititorul in multe feluri, prin prisma faptului ca povestea tanarului medic in devenire este una dura, sanatatea fiind cel mai de pret lucru pe care noi il putem avea, iar lipsa acesteia si confruntarea cu o boala grava schimba cu totul perspectiva vietii pacientului si a familiei acestuia. Viitorul pare din ce in ce mai indepartat, chiar imposibil de atins, atunci cand esti diagnosticat cu o boala letala, iar boala Castleman era, in anul 2010, momentul in care David s-a imbolnavit, prea putin studiata, sa nu mai spunem incurabila si subfinantata, aceasta primind cu 2% din finantarea pe care o primeau alte boli rare. Astfel, cu o groaza care plana constat asupra lui, la care se adauga sentimentul de frustrare, costientizarea ca nici macar medicii nu sunt infailibili in fata unei asemenea boli si incercarea continua de a-si mentine in viata, prin diverse tratamente experimentale, organele care incepeau sa-i cedeze rand pe rand, David incepe munca la propria-i diagnosticare diferentiala si contacteaza nenumarati medici din alte tari pentru a putea descoperi ceva ce altora poate le-a scapat, un cat de mic detaliu care ar ajuta la o schimbare favorabila a starii lui dezastruoase de sanatate, pentru a avea o cat de mica sansa in fata bolii.
Cartea reda eforturile titanice depuse de medici pentru a-l tine in viata pe David si perseverenta cu care acesta refuza sa se dea batut, cautand neincetat solutii si experimente de pe patul de moarte. Ambitia si hotararea lui de a trai cat mai mult si de a oferi si altor pacienti diagnosticati cu aceeasi boala o sansa la o viata decenta sunt incredibile. Asa cum el insusi declara, „gandeste, actioneaza, este despre felul in care imi programam speranta, in care o transformam in actiuni asumate si intreprinse in fiecare zi.” David refuza sa mai astepte o minune si isi creeaza, pas cu pas, propriul lui miracol, privind cu asumare si sinceritate inlauntrul sau, acceptandu-si conditia de fiinta muritoare, dar si de om si medic in devenire care are puterea si resursele de a actiona cu fremitate, de a lasa in urma lui o mostenire transpusa in nenumarate informatii si experimente ce pot imbunatati si chiar salva viata altor pacienti. O lupta contra cronometru in care miza este viata. O lupta atat cu boala in sine, cat si cu demonii dinlauntrul nostru, cu propriile convingeri, limitari si asteptari.
Dupa ani intregi de durere, recidive aproape fatale, lupte, strangeri de fonduri, cercetari stiintifice si calatorii dintr-o tara in alta, David se poate mandri cu o perioda de cinci ani in care nu a mai experimentat nicio recidiva. Insa misunea lui nu este finalizata. Demonul pandeste in continuare din umbre, el este un rau prezent in viata atator oameni, carora le destabilizeaza credintele, familia si viitorul. Un rau de o tangibilitate sfasietoare, care preschimba oamenii zambitori in pacienti pe ale caror chipuri se citeste durerea si sfarsitul. Insa Fajgenbaum este unul dintre acei oameni care a luptat fata in fata cu acest demon, l-a infruntat, l-a privit in ochi si, dupa sute de zile in care s-a lasat prada disperarii, a hotarat sa incerce imposibilul. Si a reusit, s-a salvat din ghearele intunericului si continua sa-i salveze si pe altii. David este un om valoros pentru noi toti, pentru medicina, evolutie, stiinta si umanitate.
Lectura este una profund umana, despre puterea de a transforma speranta in fapte, supravietuire, fragilul parg dintre viata si moarte si, nu in ultimul rand, modalitatea in care ne petrecem viata, cu cata profunzime o traim si cat de mult o lasam pe ea sa ne consume, prioritatile pe care le avem si oamenii cu care ne inconjuram si pe care-i alegem sa ne fie alaturi, la bine, dar mai ales la greu.
“Boala te face diferit. In feluri pe care le simti repede ca fiind nedrepte.”
“Cineva trebuia sa transforme speranta in actiune, pentru a transforma aceste lucruri in realitate. Daca tu nu o faci, de multe ori n-o va face nici altul.”
In cautarea vindecarii este cartea de memorii a unui medic care, de la o varsta frageda, s-a confruntat cu o boala rara, necrutatoare, denumita boala Castelman, care se manifesta ca o combinatie intre cancer si tulburare autoimuna. Boala l-a lovit din plin si pe neasteptate pe cand David studia in cadrul facultatii de medicina, venind ca un soc la numai cativa ani dupa moartea mamei sale, aceasta pierzand lupta cu cancerul.
Lectura este sensibila si are capacitatea de a atinge cititorul in multe feluri, prin prisma faptului ca povestea tanarului medic in devenire este una dura, sanatatea fiind cel mai de pret lucru pe care noi il putem avea, iar lipsa acesteia si confruntarea cu o boala grava schimba cu totul perspectiva vietii pacientului si a familiei acestuia. Viitorul pare din ce in ce mai indepartat, chiar imposibil de atins, atunci cand esti diagnosticat cu o boala letala, iar boala Castleman era, in anul 2010, momentul in care David s-a imbolnavit, prea putin studiata, sa nu mai spunem incurabila si subfinantata, aceasta primind cu 2% din finantarea pe care o primeau alte boli rare. Astfel, cu o groaza care plana constat asupra lui, la care se adauga sentimentul de frustrare, costientizarea ca nici macar medicii nu sunt infailibili in fata unei asemenea boli si incercarea continua de a-si mentine in viata, prin diverse tratamente experimentale, organele care incepeau sa-i cedeze rand pe rand, David incepe munca la propria-i diagnosticare diferentiala si contacteaza nenumarati medici din alte tari pentru a putea descoperi ceva ce altora poate le-a scapat, un cat de mic detaliu care ar ajuta la o schimbare favorabila a starii lui dezastruoase de sanatate, pentru a avea o cat de mica sansa in fata bolii.
Cartea reda eforturile titanice depuse de medici pentru a-l tine in viata pe David si perseverenta cu care acesta refuza sa se dea batut, cautand neincetat solutii si experimente de pe patul de moarte. Ambitia si hotararea lui de a trai cat mai mult si de a oferi si altor pacienti diagnosticati cu aceeasi boala o sansa la o viata decenta sunt incredibile. Asa cum el insusi declara, „gandeste, actioneaza, este despre felul in care imi programam speranta, in care o transformam in actiuni asumate si intreprinse in fiecare zi.” David refuza sa mai astepte o minune si isi creeaza, pas cu pas, propriul lui miracol, privind cu asumare si sinceritate inlauntrul sau, acceptandu-si conditia de fiinta muritoare, dar si de om si medic in devenire care are puterea si resursele de a actiona cu fremitate, de a lasa in urma lui o mostenire transpusa in nenumarate informatii si experimente ce pot imbunatati si chiar salva viata altor pacienti. O lupta contra cronometru in care miza este viata. O lupta atat cu boala in sine, cat si cu demonii dinlauntrul nostru, cu propriile convingeri, limitari si asteptari.
Dupa ani intregi de durere, recidive aproape fatale, lupte, strangeri de fonduri, cercetari stiintifice si calatorii dintr-o tara in alta, David se poate mandri cu o perioda de cinci ani in care nu a mai experimentat nicio recidiva. Insa misunea lui nu este finalizata. Demonul pandeste in continuare din umbre, el este un rau prezent in viata atator oameni, carora le destabilizeaza credintele, familia si viitorul. Un rau de o tangibilitate sfasietoare, care preschimba oamenii zambitori in pacienti pe ale caror chipuri se citeste durerea si sfarsitul. Insa Fajgenbaum este unul dintre acei oameni care a luptat fata in fata cu acest demon, l-a infruntat, l-a privit in ochi si, dupa sute de zile in care s-a lasat prada disperarii, a hotarat sa incerce imposibilul. Si a reusit, s-a salvat din ghearele intunericului si continua sa-i salveze si pe altii. David este un om valoros pentru noi toti, pentru medicina, evolutie, stiinta si umanitate.
Lectura este una profund umana, despre puterea de a transforma speranta in fapte, supravietuire, fragilul parg dintre viata si moarte si, nu in ultimul rand, modalitatea in care ne petrecem viata, cu cata profunzime o traim si cat de mult o lasam pe ea sa ne consume, prioritatile pe care le avem si oamenii cu care ne inconjuram si pe care-i alegem sa ne fie alaturi, la bine, dar mai ales la greu.
October 26, 2025
I first heard about Dr. Fajgenbaum at a rheumatology conference and knew I had to read his book. His well-written story about how frustrating it is to work with orphan diseases really resonated with me and brought me to tears. His approach to find his own cure is amazing. Highly recommend!
April 5, 2021
What a well written, fascinating, and inspiring story. As a rare disease patient interested in medicine myself (I'm an epidemiologist with hyperfocus in and out of the hospital among colleagues, so I really share in that struggle), this is my goal. I feel like this book will push me to bounce back stronger. To realize people might look at you funny when you do and that's okay. It's also an important reminder that medicine is as flawed as anything else. No one can possibly understand what you are going through or the motivating force behind your desire to improve your life as someone passionate about the subject. Like the author, I'd put medicine on a pedestal and it was devastating when I realized how imperfect it is. It is even more frustrating being in the discipline because you know it's not for lack of caring usually - but a maintaining of the status quo. When you experience it yourself and realize people's lives at stake and in danger because of the status quo, the urge is to scream and pull your hair out. Because you know we can do better. What the author finally realizes though is that if you are the one interested in the question you have to go for it. So much could be changed in the world by people who have nothing left lose - who aren't afraid to go after new perspectives and knock down barriers. I love the theme of this book - Hope should inspire rather than pacify! Scientific discovery, by definition, defies common sense!!! After all, there is no sense waiting for someone else to do what you were meant to do.
January 12, 2023
My daughter’s rare disease at 13, (that she was fortunate enough to survive), is definitely what attracted me to this incredible book.
I have such a great respect and appreciation for the brilliant people who do research and find cures for the mysterious, potentially deadly illnesses. They are super hero’s.
This inspiring author actually has the disease he is actively working to control by developing communication between doctors, patients, drug companies, and as many contacts as possible who can contribute their knowledge or research.
Personal note-His mention of the successful research and meds found to treat her2 breast cancer was comforting, as I am a 2 time her2 positive breast cancer her survivor.
I have such a great respect and appreciation for the brilliant people who do research and find cures for the mysterious, potentially deadly illnesses. They are super hero’s.
This inspiring author actually has the disease he is actively working to control by developing communication between doctors, patients, drug companies, and as many contacts as possible who can contribute their knowledge or research.
Personal note-His mention of the successful research and meds found to treat her2 breast cancer was comforting, as I am a 2 time her2 positive breast cancer her survivor.
June 26, 2025
Fajgenbaum shares his experience of a terrifying disease about which little was known when he first got ill. It is amazing to see how much he was able to accomplish in research, the importance of advocacy both while sick and in health. Testing off label FDA approved drugs is a really interesting concept and I think the question he raises about how many diseases can be cured with already approved drugs is a good one. It really opened my eyes to how complex research regulations can be and how difficult it is to actually study diseases (though a lot of these regulations are in place for good reason). I wonder how much of this success can be attributed to his “hyperfocus” but Fajgenbaum is an amazing individual and iMCD is lucky to have a leader like him
September 22, 2021
Zaczynam dochodzić do wniosku, że lekarze nie powinni pisać książek, a ja nie powinnam ich czytać. Ale mimo to wciąż to robię, łudząc się, że trafię na jakąś perełkę i wciąż się zawodzę. Już dawno nauczyłam się, że jeśli książka zyskała miano najlepszej i wszyscy ją chwalą, nie oznacza to, że ja się w niej zakocham.
Książka Davida wydaje się tak inna od wspomnień innych śmiertelnie chorych lekarzy, a jednak niczym się nie różni. Będąc na studiach młody chłopak, zaledwie dwudziestokilkulatek trafia do szpitala z wielonarządową niewydolnością narządów. W ciągu kilkunastu miesięcy pięciokrotnie ociera się i smierć i wciąż nie wie, co mu dolega. Ma przeczucie, że lekarze nie sprawdzili wszystkiego i miał rację, samodzielnie wraz z rodziną dochodząc do tego, co mu jest. Choruje na chorobę Castlemana, a jego źródła mówią, że jest dopiero piątym pacjentem, u którego stwierdzono tą chorobę.
Będąc po raz kolejny na granicy śmierci, żegnając się z bliskimi i przyjmując ostatnie namaszczenie, w Davidzie budzi się duch walki. Skoro lekarze nic nie wiedzą, eksperymentalna terapia nie działa, a bliscy rezygnują z życia, by przy nim być, on sam musi o siebie zawalczyć. I robi to. Zbiera zespół, fundusze i walczy.
Nie będę wam mówić, jak skończyła się ta historia, bo nie chcę spoilerować, ale to opowieść o miłości, o nadziei, o walce o swoje życie. Powinna być emocjonalna, doprowadzić mnie do łez, a przyznam szczerze, że przez ogrom żargonu medycznego potwornie mnie wynudziła. Doceniam ją, trochę żałuje, że nie mówiło się o niej więcej, bo naprawdę warto się z nią zapoznać. Tylko czy musiała zostać napisana w tak nużący sposób?
Książka Davida wydaje się tak inna od wspomnień innych śmiertelnie chorych lekarzy, a jednak niczym się nie różni. Będąc na studiach młody chłopak, zaledwie dwudziestokilkulatek trafia do szpitala z wielonarządową niewydolnością narządów. W ciągu kilkunastu miesięcy pięciokrotnie ociera się i smierć i wciąż nie wie, co mu dolega. Ma przeczucie, że lekarze nie sprawdzili wszystkiego i miał rację, samodzielnie wraz z rodziną dochodząc do tego, co mu jest. Choruje na chorobę Castlemana, a jego źródła mówią, że jest dopiero piątym pacjentem, u którego stwierdzono tą chorobę.
Będąc po raz kolejny na granicy śmierci, żegnając się z bliskimi i przyjmując ostatnie namaszczenie, w Davidzie budzi się duch walki. Skoro lekarze nic nie wiedzą, eksperymentalna terapia nie działa, a bliscy rezygnują z życia, by przy nim być, on sam musi o siebie zawalczyć. I robi to. Zbiera zespół, fundusze i walczy.
Nie będę wam mówić, jak skończyła się ta historia, bo nie chcę spoilerować, ale to opowieść o miłości, o nadziei, o walce o swoje życie. Powinna być emocjonalna, doprowadzić mnie do łez, a przyznam szczerze, że przez ogrom żargonu medycznego potwornie mnie wynudziła. Doceniam ją, trochę żałuje, że nie mówiło się o niej więcej, bo naprawdę warto się z nią zapoznać. Tylko czy musiała zostać napisana w tak nużący sposób?
December 3, 2022
It was an inspirational and emotional reading for me. I admired how the author struggled with the disease and motivated himself to achieve something valuable for the whole of humanity. Some parts were long and overwhelming. Nevertheless, it is worth reading if you are interested in the life of a person who suddenly hit the rock bottom.
March 22, 2023
This was quite a story. A great way to bring awareness to Multicentric Castleman disease. I didn't know it even existed until reading this. Will definitely get you in your feels. It was written very well and the author reads it himself in the audiobook making it that much better.
March 12, 2025
While this book could have used some better editing/pacing, it was a compelling read and a pretty incredible story. However, the heavy use of technical language and medical terminology may be challenging for those without a medical background. I highly recommend it to anyone in the medical field.
September 15, 2019
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.
*Full disclosure: The author is my cousin’s husband.❤️ He’s as genuine and inspiring in person as he is in his writing.
May 1, 2019
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.
October 19, 2020
“Fear disintegrates. Doubt disorganized. Hope clears the way…”
So writes Dr. David Fajgenbaum, the author of a truly heroically inspiring book. Part romance, part medical thriller, and all memoir and true, this book will leave you in awe. How the Beast of football became the Beast of rare diseases is incredible.
David played Division I college football. His mother died of brain cancer while he was still in college and it understandably rocked him. He vowed to become a doctor to fight cancer. And then he ended up becoming a doctor to fight his own rare disease. While still in medical he became alarmingly ill. Fatigue and unwellness quickly changed to a failure of his major organs. Was it cancer?
No, his diagnosis, which took awhile, turned out to be Castleman’s Disease, first discovered in 1954. Only one drug was available, and that drug didn’t help David. He suffered through 4 more agonizing relapses, where he was near death and given last rites.
David decided to use his hyper focused thinking skills to research and defeat Castleman’s. In the book, he tells of his disease, treatments, and how he established the Castleman’s Disease Collaborative Network. He first became ill in 2010, and he has all ready accomplished so much. His research has now given him 5 years without a relapse. And his organization has changed the way rare disease research and funding is handled. “I became invincible in hope only after I realized I was called to act …on my hope.”
Also since 2010, he married his true love and they had a baby in 2018! He noted that his “experience has liberated me to follow my passions. I have an incredible sense of purpose now.” Be sure to read his biography at the end of the book- well-done Dr. Fajgenbaum.
You can learn more about Castleman’s and rare disease research at https://www.cdcn.org/
The author writes with a clear and energized style. He makes the medical parts easy to understand. I will pray for him and his family that they can continue to stay strong.
Thanks to NetGalley and Random House Publishing Group Ballantine for a digital review copy. This is my honest review.
So writes Dr. David Fajgenbaum, the author of a truly heroically inspiring book. Part romance, part medical thriller, and all memoir and true, this book will leave you in awe. How the Beast of football became the Beast of rare diseases is incredible.
David played Division I college football. His mother died of brain cancer while he was still in college and it understandably rocked him. He vowed to become a doctor to fight cancer. And then he ended up becoming a doctor to fight his own rare disease. While still in medical he became alarmingly ill. Fatigue and unwellness quickly changed to a failure of his major organs. Was it cancer?
No, his diagnosis, which took awhile, turned out to be Castleman’s Disease, first discovered in 1954. Only one drug was available, and that drug didn’t help David. He suffered through 4 more agonizing relapses, where he was near death and given last rites.
David decided to use his hyper focused thinking skills to research and defeat Castleman’s. In the book, he tells of his disease, treatments, and how he established the Castleman’s Disease Collaborative Network. He first became ill in 2010, and he has all ready accomplished so much. His research has now given him 5 years without a relapse. And his organization has changed the way rare disease research and funding is handled. “I became invincible in hope only after I realized I was called to act …on my hope.”
Also since 2010, he married his true love and they had a baby in 2018! He noted that his “experience has liberated me to follow my passions. I have an incredible sense of purpose now.” Be sure to read his biography at the end of the book- well-done Dr. Fajgenbaum.
You can learn more about Castleman’s and rare disease research at https://www.cdcn.org/
The author writes with a clear and energized style. He makes the medical parts easy to understand. I will pray for him and his family that they can continue to stay strong.
Thanks to NetGalley and Random House Publishing Group Ballantine for a digital review copy. This is my honest review.
February 13, 2020
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.
August 28, 2020
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.
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.
April 29, 2021
“Approximately 95% of rare diseases do not have a single FDA-approved therapy because they are so poorly understood.”
Occasionally there are books that are easier to review than others. Chasing My Cure by David Fajgenbaum is more difficult - more for its impact on what it means for me as a healthcare provider.
The author, Dave, was diagnosed with Castleman’s disease at the age of 25. A disease so rare with little collaborative research at the time. This is his story of personal and professional struggles and triumphs. He is very fortunate that he not only has a father who is a physician, but also to be in medical school when he had his first flare of this disease. Already a very driven individual, he has been able to join forces with his education to fight for a cure. A complex disease, he approached the fight different than many by pulling experts around the world together and becomes a cofounder of the Castleman Disease Collaborative Network (CDCN). They work towards the goal of research, network, and to provide answers to professionals and patients alike. I had only heard of the disease at the time of picking this up and appreciate the dedication Dave put into this. Not just for himself, but for those around the world. Hopefully “I don’t know” is said less every day.
In terms of the writing itself, some mind stumble over medical terminology, but there are fairly good explanations. I do think anyone can gain insight from reading this book and appreciate not only the advancements in science, but also learning there are so many unknowns as well. If anything, let this be a reminder to be an advocate for yourself and others when you’re not finding answers. They just might not be found yet.
To learn more about Castleman Disease, I encourage you to go to @curecastleman
Thanks to Netgalley and Ballantine Books for this ebook! All thoughts above are my own.
Occasionally there are books that are easier to review than others. Chasing My Cure by David Fajgenbaum is more difficult - more for its impact on what it means for me as a healthcare provider.
The author, Dave, was diagnosed with Castleman’s disease at the age of 25. A disease so rare with little collaborative research at the time. This is his story of personal and professional struggles and triumphs. He is very fortunate that he not only has a father who is a physician, but also to be in medical school when he had his first flare of this disease. Already a very driven individual, he has been able to join forces with his education to fight for a cure. A complex disease, he approached the fight different than many by pulling experts around the world together and becomes a cofounder of the Castleman Disease Collaborative Network (CDCN). They work towards the goal of research, network, and to provide answers to professionals and patients alike. I had only heard of the disease at the time of picking this up and appreciate the dedication Dave put into this. Not just for himself, but for those around the world. Hopefully “I don’t know” is said less every day.
In terms of the writing itself, some mind stumble over medical terminology, but there are fairly good explanations. I do think anyone can gain insight from reading this book and appreciate not only the advancements in science, but also learning there are so many unknowns as well. If anything, let this be a reminder to be an advocate for yourself and others when you’re not finding answers. They just might not be found yet.
To learn more about Castleman Disease, I encourage you to go to @curecastleman
Thanks to Netgalley and Ballantine Books for this ebook! All thoughts above are my own.
May 24, 2020
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.
> 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.
December 30, 2020
I was sold on reading this book solely because like myself it was written by a former student-athlete. It was inspiring to read how Dr. Fajgenbaum directed the skills and focus that once made him a stand out athlete towards leading the fight against his very rare disease and becoming a leading authority on the disease.
As I read this book I found similarities between Dr Fajgenbaums meticulous and obsessive approach towards his fight and what many of us athletes refer to as “Mamba Mentality” thanks to basketball legend Kobe Bryant. Dr Fajgenbaums story is an incredible lesson to all athletes of how “Mamba Mentality” transcends sports, and how we can be all be great off the field using the skills we developed as athletes.
As I read this book I found similarities between Dr Fajgenbaums meticulous and obsessive approach towards his fight and what many of us athletes refer to as “Mamba Mentality” thanks to basketball legend Kobe Bryant. Dr Fajgenbaums story is an incredible lesson to all athletes of how “Mamba Mentality” transcends sports, and how we can be all be great off the field using the skills we developed as athletes.
March 27, 2021
Great narration by the author. It's a medical mystery and love story. The author was physically fit, forging his path to become a doctor, following in his father's footsteps. Then, disaster hits. He had multisystem organ failure of unknown cause. He was later diagnosed with Castleman Disease, an orphan disease with very little research done because of its rarity. Coming to the brink of death more than once and surviving forged a physician with more compassion and founded the Castleman Disease Collaborative Network, bringing his stubbornness, knowledge and crowdsourcing together to further research and finally live to tell the tale.
June 2, 2020
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.
February 10, 2021
Not sure how I came across this gem. This book is similar to "When Breath Becomes Air" in that it follows a doctor's pursuit to treat an ailment. The author really let's you into their life to explain what each day felt like. The book is truly inspiring and I strongly recommend it.
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