Woman Searched 19 Years for a Diagnosis—Then Her Mom Made a TV Show
Ilana Jacqueline was sick on and off for 19 years. Her mother's bright spark in a TV studio led to surprise answers.
For the first 19 years of her life, Ilana Jacqueline endured severe recurring infections that antibiotics couldn't cure and unrelenting chronic pain without a proper diagnosis. Her mother, a television producer at Brandstar Entertainment, decided to bring her daughter's struggle into the public eye, ultimately securing a diagnosis for Jacqueline and raising awareness about medical mysteries.
After nearly two decades of searching, Jacqueline was identified with primary immune deficiency disease, also known as hypogammaglobulinemia, a condition where the body doesn't produce the essential components of the immune system. Jacqueline, now 36, shared that she is now susceptible to severe infections, struggles to fight off the same pathogens repeatedly, and is prone to lasting organ damage due to her body's inability to mount a fever response to illnesses.
Her mother's dedication to bringing her daughter's medical mystery to light, along with the support of a team of doctors, ultimately led to her diagnosis and treatment. Despite the long journey and subsequent organ damage, Jacqueline is grateful for her condition, as it falls into the 5 percent of rare diseases with an FDA-approved treatment.
She currently self-infuses immunoglobulins, a treatment requiring thousands of plasma donors to maintain her health, and is thankful for her medical team, doctors, and plasma donors. Jacqueline's story has inspired others, as her mother co-developed a Lifetime series, Behind the Mystery: Rare and Genetic Diseases, which now hosts episodes about specific rare diseases and helps un-diagnosed patients find answers.
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