The Balancing Act Raises Awareness for Rare Disease Day

It might shock you to learn that nearly one in every ten Americans suffers from a rare disease.  A common thread linking more than 7,000 rare diseases is a broad diversity of relatively common symptoms that often lead to misdiagnosis and delayed treatment.

Sadly, millions of misdiagnosed patients end up suffering through inappropriate medical interventions including surgery, medicines, and psychological treatment.

To raise awareness for these little-known illnesses, those affected chose the last day in February – the rarest day of the year during leap years – to recognize World Rare Disease Day. After being launched in Europe and spreading to the U.S. in 2009, Rare Disease Day has surged rapidly in popularity, now boasting participation from more than 80 countries around the world.

On February 28th, 2017, Behind the Mystery: Rare & Genetic  — airing nationally on Lifetime Television — recognizes World Rare Disease Day by dedicating the episode to raising awareness about rare and genetic diseases, along with their impact on patients and their families.

As we enter our fifth season of programming, Behind the Mystery: Rare & Genetic highlights the rare, or “orphan,” disease community on our morning show, The Balancing Act.

Orphan diseases are defined as conditions that affect less than 200,000 people nationwide, such as ALS (Lou Gehrig’s disease) and Amyloidosis.

Because a lack of scientific knowledge and readily accessible information hinders early diagnosis, rare disease sufferers – and family members like me – believe that staging grassroots campaigns like Rare Disease Day is crucial to making progress.

In the special episode, the program will detail rare diseases Neuroendocrine Tumors (NETS) and X-Linked Hypophosphatemia. Additionally, the show welcomes back my daughter Ilana Jacqueline, whose Primary Immune Deficiency Disease diagnosis motivated us to launch the Behind the Mystery: Rare & Genetic series.

Ilana’s experience with rare disease inspired her to become an advocate; she is the Managing Editor of The RARE Daily at Global Genes, author of the upcoming book Surviving and Thriving with an Invisible Chronic Illness and the mind behind the informational blog http://www.letsfeelbetter.com.

When Ilana first got sick, all I wanted to do was research, join communities and find other patients. What I ended up discovering was there are over 7,000 different types of rare diseases, and that 30 million people are currently living with a rare disease in the U.S. There was a lot to learn.

I found help from my co-producer, Molly Mager, who also had a personal connection to the rare disease world; her brother had been diagnosed with Acinar Cell Cystadenoma. We began to speak with pharmaceutical companies, disease foundations and patients about the best way to educate our audience.

“We want to break down these segments into ‘what is this disease?’, ‘who gets it’, and ‘what can be done about it?”, says Mager. “We’re speaking with the top players in the pharmaceutical industry and their lead scientists. One thing that rare disease patients need is hope —and we’re investigating what’s in the pipeline today that’s going to give us the answers tomorrow.”

From patients and families to researchers, health professionals and regular folks, Rare Disease Day is open to everyone. The Rare Disease Day website offers seven ways to participate this year, including telling your personal story, posting an event and interacting via social media.

To learn more about World Rare Disease Day, please visit http://www.rarediseaseday.org. For more on the upcoming segment and past Behind the Mystery segments, please visit http://www.thebalancingact.com/rare and http://www.accesshealth.tv.

Carri Levy is a producer for Behind the Mystery: Rare & Genetic, and is a rare disease advocate, blogger and speaker.

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