Carri Levy’s daughter suffered for years with undiagnosed illness. Their journey to find answers led to the creation of the televised patient-advocacy series Behind the Mystery.
Behind the Mystery, a half-hour series featured on Lifetime’s daily morning show The Balancing Act, was created by producer Carri Levy, in search of a diagnosis for her sick daughter who had gone undiagnosed for years.
“I put her symptoms into Google, and I found the National Organization for Rare Disorders. I saw there were over 7,000 rare diseases I knew nothing about,” says Levy. “I created the ‘Behind the Mystery’ series to help find what was wrong with my daughter, but also to raise awareness about rare and genetic diseases.”
The relentless search for answers
It wasn’t an easy road for Carri and her daughter, Ilana Jacqueline. Ilana had gone undiagnosed for almost two decades, while enduring many misdiagnoses, medical gaslighting, and multiple hospitalizations.
“I grew up as the stereotypical sick kid. My mom would take me to the doctor, we’d beg them to run tests, but even those who agreed to investigate didn’t know where to start,” says Ilana. “My mother passed on the gift of self-advocacy, and when I turned 18, it was my turn to fight for a diagnosis. I spent my entire first year of college going to doctor appointments in every specialty while my mom continued to seek out answers through the rare disease community. At 19-years-old, with the help of an infectious disease doctor, I was finally diagnosed with a rare condition called hypogammaglobulinemia, a Primary Immunodeficiency Disease (PIDD).”
Carri and her daughter were overjoyed to reach the end of the diagnostic odyssey, but it would be another 10 years before Ilana had an immunologist that would perfect a treatment plan for her.
Committed to advocacy work
Despite reaching the conclusion of their search for answers, neither Carri nor Ilana have left the advocacy community. Ilana, who now works as a patient advocate, influencer, and is the author of the book “Surviving and Thriving with an Invisible Chronic Illness,” continues to educate about the impact of a delayed diagnosis. “Behind the Mystery” continues its pursuit to help patients and caregivers understand the relevance of rare.
These 7,000-plus rare diseases affect approximately 300 million people worldwide, including 25 to 30 million Americans. Partnering with industry and advocacy experts to amplify the voice of rare disease is Carri’s goal. “Behind the Mystery” is currently celebrating 10 years on the air, and in that time, over 100 rare diseases have been featured, helping those with undiagnosed disorders find possible answers and how to pursue them.
Connecting communities with care
“The rare disease community is proactive and resilient,” says Levy. “I feel blessed that we’ve been able to create ‘Behind the Mystery’ for 10 years and to be able to give it a voice on national TV. The people watching the show are appreciating the topics, finding treatments, and they are finding community.”
When asked how she feels about the success of “Behind the Mystery,” Levy responds, “It’s an honor to work with these physicians and foundations whose sole purpose is to help rare disease patients and their families.”
For more information about “Behind the Mystery,” visit: TheBalancingAct.com/rare
