Woman Searched 19 Years for a Diagnosis—Then Her Mom Made a TV Show
Newsweek · C · trust 47/100
0 Share Newsweek is a Trust Project member See more of our trusted coverage when you search. Prefer Newsweek on Google to see more of our trusted coverage when you search. Ilana Jacqueline spent the first 19 years of her life suffering from severe repeat infections that antibiotics failed to tackle and seemingly endless chronic pain. She always knew something was wrong, but no doctor had figured out what. But everything changed when her mother, then a television producer at Brandstar Entertainment, decided to take her struggle public, securing her daughter a diagnosis and helping hundreds of strangers along the way by launching a network series all about medical mysteries that is now fronted by Mario Lopez.
Now 36, Jacqueline told Newsweek that the disease finally identified after nearly two decades of searching and the launch of a Lifetime series was primary immune deficiency disease, also known as hypogammaglobulinemia.
"Essentially, my body doesn't make the building blocks of the immune system," Jacqueline, who pivoted from public relations to a portfolio career in patient advocacy, said. "I'm susceptible to severe infections that are difficult to treat, I can re-infect myself with the same pathogens because my body doesn't keep memory of infections I've had."
Her body, she said, does not mount a fever in response to illness, meaning infections can linger for long stretches, resist single courses of antibiotics and, over time, cause lasting organ damage. Sadly, that is precisely what happened during her medical odyssey.
"Because I went both 19 years without a diagnosis and then another 10 trying to find a doctor who knew how to treat my disease, I ended up having quite a bit of organ damage to my lungs, GI tract, sinuses, and have many comorbidities that I now have to live with alongside the disease," Jacqueline said. "All that said, I am very lucky."
When asked why, she said her gratitude comes from the fact her disease is one of the roughly 5 percent of rare diseases with an FDA-approved treatment. Every week, Jacqueline self-infuses immunoglobulins, a plasma-derived product that requires close to 10,000 plasma donors per infusion to keep her healthy.
"I'm very grateful for my village, my doctors, and the plasma donors who make the act of me getting out of bed every morning a reality," she said.
Five years into treatment, her infection rate has dropped, and her immunoglobulin levels are now close to average. She credits her mother's bright spark with getting her life back.
In 2008, when Jacqueline was 18, her mother was working as a TV producer at Brandstar Entertainment, a studio in Florida. A worried mother, she naturally wanted to devote all her time to solving her daughter's medical mystery and alleviating her pain, though, like most working parents, she was obliged to busy herself chasing guests, speakers and stories for her employers during the day.
Determined to prioritize Jacqueline without disgruntling her managers, her solution was to pitch an entirely new series to the studio. If greenlit, she could spend her working hours speaking with rare-disease nonprofits, hard-to-reach experts and pharmaceutical companies developing treatments—research that doubled as a hunt for answers to her daughter's symptoms.
A few months in and her leap of faith paid off. Through one of those calls, Jacqueline's mother learned about immune deficiency diseases, and a chance connection—Jacqueline's stepfather met an infectious disease doctor who agreed to review the case—led to the long-awaited diagnosis.
"It was a team effort from both my parents and the fresh eyes of a physician," Jacqueline said.
Determined that no other family endure a similar 19-year wait, Jacqueline's mother co-developed Behind the Mystery: Rare and Genetic Diseases on Lifetime's The Balancing Act into a long-running series where pharmaceutical companies sponsor episodes devoted to specific diseases, with patients sharing their symptoms through public-service style segments aimed at reaching the undiagnosed.
Fifteen years later, the show remains on the air, now hosted by celebrity couple, Mario and Courtney Lopez .
"Her work has helped hundreds of patients solve their medical mystery, and I am so proud of her," Jacqueline said.
Following her diagnosis, Jacqueline's own path has run in parallel. In her 20s she launched a blog chronicling her attempts to assemble a medical team and manage a rare disease largely alone—a project, she said, that resonated widely as social media platforms grew.
She later left a professional career in public relations for patient advocacy, working intake at the nonprofit Global Genes, where she spoke with countless others who also experienced unusual symptoms followed with medical gaslighting.
Her time there shaped her later writing career, and she eventually published Surviving and Thriving with an Invisible Chronic Illness and Medical Gaslighting . She now works as a consultant helping healthcare companies center the patient experience while sharing advice to fellow chronic illness sufferers online .
"Solving a medical mystery takes a village," Jacqueline said. "But I'm so lucky my mom runs the village with an iron fist.
"Her work saved my life, and in this past decade and a half she's been the lighthouse in the dark for so many parents just trying to help their kids get their lives back."
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