Mara Shapiro’s health journey is a non-linear rollercoaster that began long before her formal diagnoses. After a decade of unexplained symptoms and a childhood marked by the loss of her mother to cancer, Mara’s health hit a breaking point during the pandemic. Severely iron deficient and weeks away from bone marrow failure, she finally received a dual diagnosis: Crohn’s Disease and Addison’s Disease (Primary Adrenal Insufficiency). However, her Crohn’s made it impossible to absorb the life-saving steroid pills required for her Addison’s, leaving her in a state of constant physical and emotional volatility.
When a world-renowned expert told her that her hope for a better quality of life was “unrealistic,” Mara turned to the patient community for answers. She discovered an “off-label” solution: using an insulin pump to deliver IV hydrocortisone in a circadian rhythm. Despite being told she had no options, Mara found a doctor willing to oversee this innovative therapy. The result was transformative; within 12 hours, she moved from crawling to the bathroom to jumping out of bed with energy.
Today, Mara is a working professional, a “Corgi mom,” and an athlete training for her first triathlon. Her resilience was tested again recently during a worldwide shortage of the drug that keeps her alive, an experience that underscored the fragile nature of medication access for rare disease patients. Now pursuing a Master’s in Public Health, Mara facilitates peer support and shapes academic research, living by the mantra that no one—not even the most prestigious doctor—defines your quality of life but you.