1. Bollerslev J, et al. European Society of Endocrinology Clinical Guideline: Treatment of chronic hypoparathyroidism in adults. Eur J Endocrinol. 2015 Aug;173(2):G1-20.
  2. Brandi ML, et al. Management of Hypoparathyroidism: Summary Statement and Guidelines. The Journal of Clinical Endocrinology & Metabolism. 2016 Jun 1;101(6):2273–83.
  3. Chen K, et al. Clinical burden and healthcare resource utilization among patients with chronic hypoparathyroidism, overall and by adequately vs not adequately controlled disease: a multi-country chart review. Journal of Medical Economics. 2019 Jun 17;22(11):1141–52.
  4. Mannstadt M, et al. Hypoparathyroidism. Nat Rev Dis Primers. 2017 Aug 31;3:17055.
  5. Clarke BL, et al. Epidemiology and Diagnosis of Hypoparathyroidism. J Clin Endocrinol Metab. 2016 Jun 1;101(6):2284–2299.
  6. Khan AA, et al. Standards of care for hypoparathyroidism in adults: a Canadian and International Consensus. Eur J Endocrinol. 2019 Mar 01;180(3):1-22.
  7. Karpf D, et al. Prevalence of hypoparathyroidism in the EU: A systematic review and meta-analysis. Endocrine Abstracts. 2020;70:AEP140.
  8. Shoback DM, et al. J Clin Endocrinol Metab. 2016;101(6):2300–12.
  9. National Cancer Institute. Bone Density. Available from: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/bone-density. [accessed October 2025].
  10. Medline Plus. Calcification. Available from: https://medlineplus.gov/ency/article/002321.htm [accessed October 2025].
  11. National Cancer Institute. Cognitive impairment. Available from: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/cognitive-impairment. [accessed October 2025].
  12. Institute of Medicine. Dietary Reference Intakes for Calcium and Vitamin D. Washington, DC: The National Academies Press; 2011.
  13. Qadeer HA, Bashire K. Physiology, Phosphate. StatPearls. 2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK560925/. [accessed October 2025].
  14. Goyal A, et al. Hypocalcemia. StatPearls. 2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK430912/. [accessed October 2025].
  15. Goyal R, Jialal I. Hyperphosphatemia. StatPearls. 2023. Available from: https://www.ncbi.nlm.nih.gov/books/NBK551586/. [accessed October 2025].
  16. National Cancer Institute. Renal Failure. Available from: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/renal-failure. [accessed October 2025].
  17. Brod M, et al. Living with hypoparathyroidism: development of the Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact). Qual Life Res. 2021 Jan;30(1):277-291. doi: 10.1007/s11136-020-02607-1. Epub 2020 Aug 24. PMID: 32833143; PMCID: PMC7847873.
  18. Kontogeorgos G, et al. Low health-related quality of life in hypoparathyroidism and need for PTH analog. Endocrine Connections. 2022 Jan 10;11(1).
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Living with hypoparathyroidism

Hypoparathyroidism (also known as hypopara) can negatively impact health-related quality of life, physical functioning, and psychological well-being.2,17,18

Living withhypoparathyroidism hero img

Living with hypoparathyroidism

The burden of hypoparathyroidism (also known as hypopara) negatively impacts health-related quality of life, physical functioning, and psychological well-being, regardless of serum calcium levels.2,17,18

Living with hypoparathyroidism

Woman in a garden

Impact of hypoparathyroidism on quality of life, physical functioning and psychological wellbeing

The burden of hypoparathyroidism (also known as hypopara) negatively impacts health-related quality of life, physical functioning, and psychological well-being, regardless of serum calcium levels. 2, 17, 18

Tab 1 content.

Tab 2 content.

Impact on quality of life

In a survey of 42 people living with hypopara, the respondents reported the following impacts on their daily life, mental health, activity and social life & relationships.17

Daily Life 17

79%
were not able to do as many things around the home
43%
said that hypopara interferes with their ability to work
67%
were unable to do as much as they used 
to/want to

Mental Health 17

81%
felt anxious or had anxiety
64%
felt frustrated
62%
felt depressed or sad

Activity 17

76%
were not able to exercise in the same way
52%
are less active than they used to be/want to be
50%
were not as mobile (including ability to walk)

Social Life & Relationships 17

79%
were less able to engage in social activities
57%
were limited in the types of social activities they could do
43%
said hypopara affected their relationships with family
Patient stories

Hear from Laura, Sabine, and Fabienne as they share their unique journeys with hypoparathyroidism. Explore the videos below to learn about the reality of diagnosis, treatment, and the impact of the condition on their lives.

Meet Laura

Transcript

00:05 – 00:10

[Logo: Seeds of change]

[On-screen heading: Growing through challenges Stories from the hypoparathyroidism community.] 


[Disclaimer: The testimonies shared in this video solely reflect the individual and personal experiences and perspectives of people living with hypoparathyroidism (hypopara). Seeds of Change is a disease awareness initiative developed and funded by Acendis Pharma, bringing together people impacted by hypopara.]

00:11 – 00:12

[On-screen heading: Laura, 35, from Spain, was diagnosed after experiencing hypoparathyroidism symptoms.]

00:12 – 00:18

Laura: It’s true that it’s something that never 100% goes away, it’s something we live with day-to-day.

00:20 – 00:23

[Info card: Hypoparathyroidism (also known as hypopara) is a rare endocrine disease, caused by insufficient levels of parathyroid hormone (PTH) in the body.1]

00:24 – 00:31

[Info card: The condition can arise from genetic, autoimmune and other causes. Most commonly, hypoparathyroidism results following neck surgery making up approximately 75% of all cases.2,3]

00:24 – 00:31

00:32 – 00:37

[Info card: Hypoparathyroidism affects numerous systems in the body and is associated with a range of short-term symptoms and long-term complications. 2,4,5]

00:38 – 00:41

[On-screen heading: Symptoms, diagnosis, and treatment]

00:42 – 00:58

Laura: The diagnosis came about because it’s true that I had some symptoms, I was very tired, joints ached a lot, and I attributed it to the fact that I had a lifestyle that was fast-paced and it’s true that I had a heavy workload.

00:59 – 01:03

[On-screen heading: Impact of hypopara]

01:04 – 01:16

Laura: The start of my professional career, it’s true that it was a bit later than usual precisely because there were many years when I was underdiagnosed, when I had a tonne of symptoms, I was almost always in the ER or being admitted.

01:17 – 01:21

[On-screen heading: Perspectives on hypopara]

01:22 – 01:31

Laura: The topic of motherhood is something that at first, since having an illness like hypoparathyroidism, it influences the decision-making process.

01:32 – 01:43

Throughout the year, I always have episodes where I’ve had to take sick leave for certain episodes of low calcium, other symptoms, or other conditions I have.

01:44 – 01:55

On an emotional level, it’s true that the illness, especially in my case, since my diagnosis was at age 23 well, the Laura who was 23 is nothing like the Laura who is 35.

01:56 – 02:00

What really happens is a grieving process for the person you were before versus the person you are now.

02:01 – 02:08

Your daily life changes, your friendships change because the moment the illness enters your life, it kind of wrecks everything.

02:14 – 02:24

[On-screen heading: Whether you are living with, know someone living with, or are caring for someone with hypopara, we hope that by shining a light on this disease and community, we can support better outcomes and quality of life.]

02:25 – 02:36

[On-screen heading: To find out more about hypopara, visit: www.seeds-of-change.com]

02:37 – 02:40

[On-screen heading: Seeds of Change]

[Logo: Ascendis Pharma]

[Reference: Seeds of Change. Ascendis Pharma. GL-COMM-2500003 December 2025]

02:41 – 02:47

[References:

  • Bollerslev J et al. European Society of Endocrinology Clinical Guideline: Treatment of chronic hypoparathyroidism in adults. Eur J Endocrinol. 2015 Aug;173(2):G1-20.
  • Brandi ML et al. Summary Statement and Guidelines. J Clin Endocrinol Metab. 2016 Jun 1;101(6):2273-83.
  • Clarke BL et al. Epidemiology and Diagnosis of Hypoparathyroidism, J Clin Endocrinol Metab. 2016 Jun 1;101(6):2284-99.
  • Mannstadt M et al. Hypoparathyroidism. Nat Rev Dis Primers. 2017 Aug 31;3:17055.
  • Shoback DM et al. Presentation of Hypoparathyroidism: Etiologies and Clinical Features. J Clin Endocrinol Metab. 2016;101(6):2300-12.]

Meet Sabine and Fabienne

Transcript

00:04 – 00:10

[Logo: Seeds of change]

[On-screen heading: Growing through challenges, stories from the hypoparathyroidism community.] 


[Disclaimer: The testimonies shared in this video solely reflect the individual and personal experiences of people living with hypoparathyroidism (hypopara). Seeds of Change is a disease awareness initiative developed and funded by Acendis Pharma, bringing together people impacted by hypopara.]

00:10 – 00:14

[On-screen heading: Sabine, 66, from Germany, was diagnosed with hypoparathyroidism after surgery.]

00:10 – 00:22

Sabine: Personality changes in the sense that my, I would say, cheerfulness was also gone, that I, yes, I would say, was almost a different person.

00:23 – 00:28

[On-screen heading: Fabienne, 26, from Germany, was diagnosed with hypoparathyroidism after thyroid cancer surgery.]

00:23 – 00:25

Fabienne: It feels like you’ve completely lost all control over your body.

00:28 – 00:34

[On-screen heading: Hypoparathyroidism (also known as hypopara) is a rare endocrine disease, caused by insufficient levels of parathyroid hormone (PTH) in the body.1]

00:35 – 00:41

[On-screen heading: Hypoparathyroidism affects numerous systems in the body and is associated with a range of short-term symptoms and long-term complications.2,4,5 ]

00:41 – 00:47

[On-screen heading: Hypoparathyroidism affects numerous systems in the body and is associated with a range of short-term symptoms and long-term complications.2,4,5 ]

00:48 – 00:52

[On-screen heading: Symptoms, diagnosis, and treatment ]

00:53 – 01:11

Sabine: In January 2008, I had thyroid surgery because I had several nodules on my thyroid, and after my surgery, it was actually determined that the function of my parathyroid glands had ceased.

01:14 – 01:22

The symptoms were fatigue, lack of motivation, but also personality changes.

01:23 – 01:28

Fabienne: My hypoparathyroidism actually appeared quite soon after the surgery.

01:29 – 01:37

I felt tingling in my hands, I had this typical “paw-like” hand posture that’s common with hypoparathyroidism, and a kind of foggy feeling in front of my eyes.

01:37 – 01:40

And yes, I just had the feeling that I somehow wasn’t myself anymore.

01:40 – 01:44

[On-screen heading: Impact of hypopara]

01:45 – 01:53

Sabine: Your quality of life is severely limited, and I was working too, my children were young.

01:54 – 02:01

Fabienne: That time was definitely marked by anxieties, especially fear for the future. I was so young when I was diagnosed.

02:02 – 02:11

Sabine: I enjoyed doing sports and, of course, did a lot with the children, with the family, a lot with friends , and with hypopara, that changed abruptly.

02:11 – 02:14

Fabienne: Long-term effects are definitely an issue with hypopara.

02:15 – 02:20

Sabine: It can have a huge impact as you get older.

02:23 – 02:29

Fabienne: Just because someone looks heathy, and everything seems fine from the outside, you have to look inside too.

02:31 – 02:36

[On-screen heading: Perspectives on hypopara]

02:36 – 02:44

Fabienne: I would say, and that’s what I would advise: look at the person, not just the patient, look at the human being. There’s a difference.

02:46 – 02:57

[On-screen heading: Whether you are living with, know someone living with, or are caring for someone with hypopara, we hope that by shining a light on this disease and community, we can support better outcomes and quality of life.]

02:57 – 03:09

[On-screen heading: To find out more about hypopara, visit: www.seeds-of-change.com]

03:09 – 03:13

[Logos: Seeds of Change, Ascendis Pharma.]

[Reference: GL-COMM-2500004]

03:13 – 03:20

[References:

  • Bollerslev J et al. European Society of Endocrinology Clinical Guideline: Treatment of chronic hypoparathyroidism in adults. Eur J Endocrinol. 2015 Aug;173*(2):G1-20.
  • Brandi ML et al. Summary Statement and Guidelines. J Clin Endocrinol Metab. 2016 Jun 1;101(6):2273-83.
  • Clarke BL et al. Epidemiology and Diagnosis of Hypoparathyroidism, J Clin Endocrinol Metab. 2016 Jun1;101(6):2284-99.
  • Mannstadt M et al. Hypoparathyroidism. Nat Rev Dis Primers. 2017 Aug 31;3:17055.
  • Shoback DM et al. Presentation of Hypoparathyroidism: Etiologies and Clinical features. J Clin Endocrinol Metab. 2016;101(06):2300-12

GL-COMMPTH-2600046 | June 2026