Survival by Advocacy: The ICU Battle That Transformed APB Speaker Taylor Coffman

09 Dec 2025

When APB exclusive speaker Taylor Coffman delivered her baby by C-section, she expected the usual risks. But what followed was beyond any parent’s worst fears. What doctors initially treated as childbirth complications unraveled into a life-threatening cascade: multiple organ failure, severe infections, toxic blood clots, and weeks spent near death in intensive care.  

But even in the depths of crisis, Coffman discovered something vital: her voice. Realizing her care teams were fragmented—each expert giving different diagnoses and recommendations—she demanded what could make the difference between life and death: coordination. She asked doctors to set up a shared communication channel, so everyone involved could see the same information, collaborate, and act fast. That simple request, she says, may have saved her life.  

+Read Her Full Story via Huffington Post 

The disease behind her collapse was identified as atypical hemolytic uremic syndrome (aHUS), a rare, often fatal condition that causes the immune system to trigger dangerous blood clots. In her case, everything from her kidneys to her brain was under attack.  

Today, Coffman publicly shares her story through her newsletter Rare Disease Girl, podcasts, interviews, and speaking engagements. She calls attention to a harsh reality that many rare-disease patients face deadly medical events; and, all too often, they lack someone to help them navigate the chaos. Coffman urges patients not to stay silent and to use their voice when it matters most. 

+View Taylor Coffman's Full Profile, Speech Topics, Videos & More