Explorez tous les épisodes du podcast HypoPara Unscripted

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.

In this episode of Hypopara Unscripted, Patty welcomes a cast of characters; three inspiring women who share how hypoparathyroidism brought them together and changed their lives forever.  If you have ever felt alone in your diagnosis, this episode is a reminder that through the power of friendship and connection you are not.

From shocking diagnoses to a true sisterhood; Liz, Chrissy, and Lisa’s bond, love and support of each other have countered their worries, fears and challenges of living with this difficult and rare condition.  Indulge in this uplifting conversation about togetherness, hope and remembering that in order to make the most of life, you may sometimes need to ‘pivot’!

To reach Patty for questions and comments you are welcome to email: pkeating@hypopara.org

In this second episode of HypoPara Unscripted, Patty talks with expert Dr. Rubin about all things hypopara. From the “SHINE” study (a research history examination of participating hypopara patients), to the real-life challenges patients live with every day, Dr. Rubin explains the effects hypopara has on bone health, brain fog, fatigue, and cognitive function. Join Patty and Dr. Rubin as she encourages self advocacy, explains how patients sometimes just don't "feel right” even though lab results look “normal” and she shares the quality of life potential with PTH based therapies.

Dr. Rubin’s insight and compassion blended with Patty’s profound patient perspective offers hope, validation and a deeper understanding of what it truly means to live with hypoparathyroidism.

In this premiere episode of HypoPara Unscripted, your host Patty Keating, Executive Director of the Hypoparathyroidism Association as well as a post-surgical hypopara patient herself, talks with world-renowned endocrinologist Dr. Michael Mannstadt. Together, they uncover how hypoparathyroidism care has evolved, the breakthroughs in genetics, PTH therapy improvements and why validation and respect mean so much to hypopara patients. This honest, hopeful and compelling first episode of Hypopara Unscripted represents a true triumph for those living with hypoparathyroidism and their providers!