HypoPara Unscripted

In this episode of HypoPara Unscripted, Patty sits down for a gripping conversation with industry veteran Stewart Hallett to speak about the difference between biotech and big pharma. Thanks to his notable experience, Stewart reveals the complex journey of drug development, how clinical trials work, as well as the billions in cost and just how long it takes to successfully bring a drug to market. Stewart and Patty also uncover the undisputed importance of the patient voice as an integral part of the process. This leads Stewart to share a powerful, personal story one which shaped his career and his belief that it must always be “about the patient”. Join Patty for this enlightening episode and find out what it all means for the HypoPara community.

What happens when a surgery described as “routine” changes your life? For Megan, thyroid removal led to hypoparathyroidism and left her with severe hypocalcemia, exhaustion, anxiety, cognitive struggles and pain, not to mention years of trying to get doctors to understand what had happened to her.

In this episode of Hypopara Unscripted, Megan gets real about the hardest parts of living with hypopara, including ER visits where no one seemed to know how to treat her, her struggle to continue to work, her fights with insurance and her fear of losing access to the treatment that finally gave her some of her life back.

Finally, Megan explains the moment she discovered the Hypopara community and how her connections and advocacy has helped herself and others feel much less alone.

What if doctors told you the difficult symptoms you had been experiencing for 28 years was just…anxiety.  Only to finally uncover that you were actually living with a rare, genetic, life-threatening disease?

For years, Debz fought for answers while her body fought to survive. She endured countless hospitalizations, heartbreaking setbacks and still to this day lives with the constant fear that the treatment keeping her alive could be taken away at any moment. But somehow, through it all, Debz refuses to lose hope.

In this unforgettable episode of HypoPara Unscripted, Debz opens up to Patty about her raw and difficult journey with HypoPara.  It is a story of resilience, strength, advocacy and purpose in the face of unimaginable misdiagnoses and emotional challenges. Debz’ journey will make you laugh, cry and reminds us all why hope and the people who stand beside us, can change everything.

What makes specialty pharmacy so special? In this episode of HypoPara Unscripted, Patty speaks with Katie Gillick, patient advocate at Orsini Specialty Pharmacy living with HypoPara, and pharmacist Michelle Hamblin to show us how they get the only FDA approved HypoPara treatment in the hands of patients. 

Together, Katie and Michelle tell us how specialty pharmacies are different from retail drug stores, including patient support, monitoring for side effects and working with insurance companies, making it clear that although starting a new treatment can feel overwhelming you won't have to navigate it alone!   

Katie shares her own personal journey with HypoPara which shapes the care she gives to others, helping to carry out Orsini’s promise that no patient will ever be left behind.

In honor of World Hypopara Day, Patty sits down with patient advocate and award-winning author Heather Novak for an inspiring conversation about finding purpose while living with the challenges of a rare disease. Heather shares her remarkable journey as a teenager with unexplained broken bones to a diagnosis of hyperparathyroidism, until after she had surgery, when she woke up with hypoparathyroidism.

Heather opens up to Patty about how she was misunderstood for so many years. Medical professionals downplayed and misdiagnosed her symptoms; dismissing them as anxiety and stress which has impacted her mentally and emotionally to this day. But for Heather, writing became both a creative outlet and a source of hope, allowing her to advocate for others living with chronic illness while pursuing her dream of being a best selling novelist.

This episode is a powerful reminder that while hypoparathyroidism may be part of your story it doesn’t have to define your future when you name it, claim it and tame it.