The impact of hypoparathyroidism - What does it mean to live with this condition? 

Welcome to the first episode in the HypoparaExchange podcast series. Listen to Dr. John Bilezikian from Columbia University, USA and Fiona, a patient living with chronic hypoparathyroidism, discuss their perspectives and experience of this rare condition. In this episode, we discuss the broad impact that the condition has on people’s lives including long-term complications. 

This podcast was produced and funded by Takeda and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. The impact of the symptoms of hypopara described in this podcast are based on a single person’s experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms. 

Date of preparation: May 2019
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HypoparaExchange Podcast: Episode One

Living with hypopara today – the burden of illness

In this episode, we hear from Professor Heide Siggelkow from the University of Göttingen in Germany, in conversation with Natalie, a patient who has lived with the condition for some 10 years now. The conversations discuss the physical impact of the disease as well as an in-depth view of some of the emotional effects that the condition may have on patients and their families.

This podcast was produced and funded by Takeda and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. The impact of the symptoms of hypopara described in this podcast are based on a single person’s experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.

Date of preparation: June 2019
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HypoparaExchange Podcast: Episode Two

In this third episode of our podcast series, HypoparaExchange, we hear from two patients and a physician all of whom describe a day in their lives, living and dealing with the rare condition hypoparathyroidism.   

Jen, a patient from the US and Isabel, a patient from the UK, both of who have been living with hypoparathyroidism for many years, describe their daily experiences, challenges and solutions for dealing with the their disease; and world-leading Endocrinologist, Professor Maria Luisa Brandi, of the University of Florence in Italy, describes a typical day in the office, including the exchange Professor Brandi has with patients, and her knowledge of the clinical aspects of managing the disease.   

The HypoparaExchange series is moderated by science writer, broadcaster and BBC journalist, Vivienne Parry. 

This podcast was produced and funded by Takeda and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. The impact of the symptoms of hypopara described in this podcast are based on a single person’s experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.

Date of preparation: September 2019
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HypoparaExchange Podcast: Episode Three

HypoparaExchange Special: Diagnosing the rare disease hypopara

The fourth episode of our podcast series, HypoparaExchange, is a special release to coincide with Rare Disease Day 2020. In this episode, we hear from Professor Karin Amrein, from the Medical University of Graz, Austria, Division for Endocrinology and Diabetology, in conversation with Conor, a patient from Ireland who has lived with the condition since the age of three. 

The conversations discuss the rarity of hypoparathyroidism, with an in-depth view into one of the many rare non-surgical forms of the condition. As well as discussing the difficulty of diagnosis, Conor also shares his experience of living with a rare disease, with Professor Amrein sharing her perspectives on clinical care experience with newly diagnosed patients.

The HypoparaExchange series is moderated by science writer, broadcaster and BBC journalist, Vivienne Parry.

This podcast was produced and funded by Takeda and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. The impact of the symptoms of hypopara described in this podcast are based on a single person’s experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.

Job code: S53317
Date of preparation: January 2020

HypoparaExchange Podcast: Episode Four

Episode 5:  Our life with hypopara – the carer perspective

In this episode of HypoparaExchange, we hear from CEO and founder of Parathyroid UK, Liz Glenister and her husband Bill. Liz and Bill describe how hypoparathyroidism has affected their lives, from patient and carer perspectives. 

Liz, who lives with hypoparathyroidism, founded Parathyroid UK in 2005 after being undiagnosed with the condition for many years. Through her organisation, Liz helps provide information and advice to those living with the condition, as well as bringing the community together to support each other, as they can often feel very isolated. In this episode, we hear Liz discuss her journey to diagnosis, how the condition affects daily life and the impact it can have on relationships with family and friends. In parallel, Bill shares his perspective as a carer for someone living with hypopara, detailing the support he provides to Liz. They also both provide helpful tips for day-to-day living with hypopara.

The HypoparaExchange series is moderated by science writer, broadcaster and BBC journalist, Vivienne Parry.

This podcast was initiated, produced and funded by Takeda Pharmaceutical Company Ltd and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. The impact of the symptoms of hypopara described in this podcast are based on a single person’s experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.

HypoparaExchange Podcast: Episode Five

HypoparaExchange. A podcast series about the rare disease hypoparathyroidism, moderated by BBC science journalist Vivienne Parry, uncovers the key challenges of living with hypoparathyroidism. Hear views and opinions from expert doctors and patients.

Hypoparathyroidism is a rare endocrine disease that occurs when inadequate levels of parathyroid hormone (PTH) are secreted by the parathyroid glands, resulting in a mineral imbalance in the body expressed by a low concentration of calcium (hypocalcemia) and a high concentration of phosphate (hyperphosphatemia) in the blood.1,2

Visit www.hypoparaanswers.eu (for non US audiences only) and www.hypoparaanswers.com (for US audiences only)for more information and join the rare disease community at www.rare2aware.com (non US).

This podcast was produced and funded by Takeda and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further advice. The impact of the symptoms of hypopara described in this podcast are based on a single person’s experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.

For more information on hypopara be sure to read our eBooks: https://bit.ly/3276K40 

About Takeda 
For more than 230 years, Takeda has brought hope to people around the world through our people-centred and innovation-driven approach to science and medicine. As a global pharmaceutical leader, we focus on solving unmet needs where we can make a real difference—and on putting patients first.

1. Abate et al. Front. Endocrinol., 2017; 7:172
2. Bollerslev et al. Eur J Endocrinol. 2015;173: G1–20.

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HypoparaExchange

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