As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. But in reality, Ilana was born with primary immune deficiency disease (PIDD) meaning she was missing a piece of her immune system, making her abnormally susceptible to disease and poorly equipped to heal from infection. She was also experiencing symptoms of a mysterious adhesion disorder, causing painful and dangerous masses of scar tissue to grow inside her body. It wasn’t until Ilana was 19 years old that these conditions were diagnosed, illuminating a mystery that had shrouded her childhood in constant medical trauma.
In this episode of the Major Pain podcast, Ilana talks us through her diagnostic journey and the subsequent time learning to manage her rare diseases, including how intravenous immunoglobulin (IVIG) infusions have improved her quality of life. We also discuss her impressive career as a patient advocate, speaker, influencer and author. In her 20s, Ilana started blogging about her life with chronic illness. This blog became so popular that Ilana was offered a book deal, and in 2018 she published her first self-help book, Surviving and Thriving with an Invisible Chronic Illness. Now working full-time to better the lives of chronic illness patients, Ilana has amassed a wealth of knowledge about navigating an infuriating healthcare system and seeking rare diagnoses. As an influencer and advocate she works to spread awareness and empathy, aiming at improving the outcomes for the next generation of chronic illness patients.
Visit Ilana online at https://ilanajacqueline.com/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
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Season 3 Premiere! Catching Up With Previous Guests – Major Pain · April 12, 2023 at 4:48 pm
[…] Lastly, we’ll chat with Ilana Jacqueline, who originally appeared in May 2022 to discuss primary immune deficiency disease and her mysterious adhesion disorder. Ilana is also dealing with the emergence of another chronic illness, having recently been diagnosed with intracranial hypertension. Her condition had become so severe that her mother noticed her eye bulging along with abnormal speech. Ilana is now receiving regular spinal taps to relieve pressure on her brain, since pharmaceutical intervention was not well tolerated. Although her doctors have recommended brain surgery, Ilana is weighing her options while working on a new book about medical gaslighting. Find her original interview here: https://majorpainpodcast.com/chronic-illness-author-and-advocate-ilana-jacqueline-shares-her-rare-di… […]