Five Researchers Who Tried To Save Their Own Lives

TL;DR

Five scientists turned personal diagnoses into research breakthroughs, discovering treatments for rare and neglected diseases that now save thousands of lives.

Key Points

• 1.David Fajgenbaum used his own archived blood samples to discover mTOR overdrive caused his fatal Castleman Disease. He repurposed sirolimus (rapamycin), an organ-transplant drug, to achieve remission; a decade later his lab has advanced 14 repurposed drugs and a phase II trial is underway for other patients.
• 2.Chris Nowinski's WWE concussion led him to build the scientific foundation for understanding CTE. He cold-called medical examiners and grieving families to collect brains one by one, eventually founding a brain bank; a 2024 study of hundreds of donated brains confirmed CTE causes brain thinning comparable to dementia.
• 3.Sonia Vallabh left law school after testing positive for the same fatal genetic prion mutation that killed her mother at 51. She and her husband earned PhDs, opened their own lab, and showed that reducing PrP protein by just 21% extended life in prion-infected mice, with human clinical trials now underway.
• 4.Julio Saez-Rodriguez applied his bioinformatics expertise to IgAN, a kidney disease he'd never studied until his own diagnosis. His big-data tools identified 20 molecular targets in IgAN and produced the IgAN atlas, which has mapped 24 active clinical trials; Saez-Rodriguez enrolled in one himself.
• 5.Pilot Susan Michaelis collapsed after a flight in 1997 and spent years proving that toxic bleed air from jet engines causes aerotoxic syndrome. Organophosphates, carbon monoxide, and formaldehyde can vaporize into cabin air during taxi and takeoff, and her doctors attributed her rare lobular breast cancer — which doesn't form a detectable lump — to these carcinogens.
• 6.Michaelis died from lobular breast cancer last year, but her research and public campaigns are reshaping aviation safety. The Boeing 787 is currently the only plane that bypasses bleed air entirely; the industry is now developing bleed-free engine designs and in-cabin air quality sensors as a direct result of her work.