Ilana Jacqueline is a patient, an advocate and the author of Surviving and Thriving with an Invisible Chronic Illness (New Harbinger, 2018) and the upcoming Medical Gaslighting: How to Get the Care You Deserve in a System that Makes You Fight for Your Life. (BenBella Books/Random House, Fall 2024)
Ilana spent 19 years on a diagnostic odyssey trying to uncover the mystery of why she was constantly sick. After many instances of medical gaslighting where her concerns were ignored and she was belittled and shamed for complaining, she was finally diagnosed with a rare immune deficiency disease, Hypogammaglobulinanemia.
For the next ten years she struggled to understand her condition, find doctors who knew how to treat her, and wrestle back her confidence and relationship with her body. Through it all, she’s shared her journey as a woman surviving and thriving with an invisible illness through blogs, books, and social media. She’s shared tips, advice, and helped patients across the world learn new ways to advocate for themselves in the exam room.
She’s been a keynote speaker for patient and physician conferences and has taken part in programs to help with continuing medical education. For five years, Ilana worked as the Managing Editor of the international rare and genetic disease non-profit, Global Genes before moving into private industry as a consultant for healthcare and pharmaceutical companies on patient education.
She has held positions as Direct of Patient Advocacy for biotechs like Face2Gene and has worked with companies like WEGO Health and Health Union on patient influencer marketing campaigns.
Her work as a patient influencer has included partnering with companies like Abbot Pharmaceuticals to star in plasma donation PSA’s.
Her work in social media (which spans across Instagram, YouTube, TikTok, and Facebook) particularly in the area of medical gaslighting, has garnered the attention of media giants like Dr. Phil and the UK’s, That’s Life. Her TikTok videos have amassed millions of views and been a trigger for women to share their own stories. She is the inspiration behind the Lifetime TV Series, Behind The Mystery: Rare and Genetic