CHASING MY CURE by David Fajgenbaum

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...“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.