{"id":3187,"date":"2025-12-12T15:53:49","date_gmt":"2025-12-12T15:53:49","guid":{"rendered":"https:\/\/seedsofchanstg.wpengine.com\/?page_id=3187"},"modified":"2026-10-30T11:43:26","modified_gmt":"2026-10-30T11:43:26","slug":"living-with-hypoparathyroidism","status":"publish","type":"page","link":"https:\/\/seeds-of-change.com\/uk\/living-with-hypoparathyroidism\/","title":{"rendered":"Living with hypoparathyroidism"},"content":{"rendered":"\n
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Living with hypoparathyroidism<\/h1>\n<\/div>\n<\/div>\n\n\n\n
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\n\"Woman\n<\/div>\n\n\n\n
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Impact of hypoparathyroidism on quality of life, physical functioning and psychological wellbeing<\/h2>\n\n\n\n

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<\/sup><\/p>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n

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\n <\/rect>\n<\/svg><\/span>Impact on quality of life<\/span><\/div>\n\n\n\n
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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<\/sup><\/p>\n<\/div>\n\n\n\n

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Daily Life 17<\/sup><\/h3>\n\n\n\n
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79%<\/h4>\n\n\n\n
were not able to do as many things around the home<\/div>\n<\/div>\n\n\n\n
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43%<\/h4>\n\n\n\n
said that hypopara interferes with their ability to work<\/div>\n<\/div>\n\n\n\n
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67%<\/h4>\n\n\n\n
were unable to do as much as they used to\/want to<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Mental Health 17<\/sup><\/h3>\n\n\n\n
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81%<\/h4>\n\n\n\n
felt anxious or had anxiety<\/div>\n<\/div>\n\n\n\n
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64%<\/h4>\n\n\n\n
felt frustrated<\/div>\n<\/div>\n\n\n\n
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62%<\/h4>\n\n\n\n
felt depressed or sad<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Activity 17<\/sup><\/h3>\n\n\n\n
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76%<\/h4>\n\n\n\n
were not able to exercise in the same way<\/div>\n<\/div>\n\n\n\n
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52%<\/h4>\n\n\n\n
are less active than they used to be\/want to be<\/div>\n<\/div>\n\n\n\n
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50%<\/h4>\n\n\n\n
were not as mobile (including ability to walk)<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Social Life & Relationships 17<\/sup><\/h3>\n\n\n\n
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79%<\/h4>\n\n\n\n
were less able to engage in social activities<\/div>\n<\/div>\n\n\n\n
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57%<\/h4>\n\n\n\n
were limited in the types of social activities they could do<\/div>\n<\/div>\n\n\n\n
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43%<\/h4>\n\n\n\n
said hypopara affected their relationships with family<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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\n <\/rect>\n<\/svg><\/span>The reality of living with hypoparathyroidism<\/strong><\/span><\/div>\n\n\n\n
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Living with hypoparathyroidism is about far more than managing symptoms or attending appointments.<\/p>\n\n\n\n

For many people, the condition affects how they work, socialise, travel, exercise and navigate everyday life. These are the challenges that often go unseen by others, yet can have a significant impact on wellbeing, independence and quality of life.<\/p>\n<\/div>\n\n\n\n

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In 2026, we asked 50 people living with hypoparathyroidism across the UK to share their experiences. Their responses offer a powerful insight into the realities of living with this rare condition and why greater awareness and understanding are still needed.<\/p>\n<\/div>\n<\/div>\n\n\n\n

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What often doesn’t get captured is how the condition affects everything that happens between appointments.<\/h2>\n\n\n\n
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Missed opportunities<\/h3>\n<\/div>\n\n\n\n
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Mental health impact<\/h3>\n<\/div>\n\n\n\n
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Lost confidence<\/h3>\n<\/div>\n\n\n\n
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Days spent recovering<\/h3>\n<\/div>\n\n\n\n
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Reduced social life<\/h3>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Hypopara’s impact on daily life<\/strong><\/h2>\n\n\n\n
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90%<\/h4>\n\n\n\n

said hypopara has changed their ability to lead the life they want to.<\/p>\n\n\n\n

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\u201cIt has really changed my life. I cannot do the same things as I once did physically. I get tired much more easily. My anxiety has been the worst part\u2026 I grieve the old me.\u201d<\/em>

Female, aged 44<\/div>\n<\/div>\n\n\n\n
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\u201c[I\u2019m] half the person I was. My health now consumes my every day. I don\u2019t get to live life to the full anymore.\u201d<\/em><\/em>

Female, aged 64<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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The ripple effect: Hypopara impacts more than someone\u2019s health<\/h2>\n\n\n\n

Among respondents, hypopara was reported to affect many aspects of day-to-day life, including:<\/p>\n\n\n\n

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Social participation<\/strong><\/h3>\n\n\n\n
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79%<\/h4>\n\n\n\n
stated the condition impacts the number of social events they can attend.<\/div>\n<\/div>\n\n\n\n
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70%<\/strong><\/h4>\n\n\n\n
said it affects hobbies and leisure activities.<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Work and independence<\/h3>\n\n\n\n
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83<\/strong>%<\/h4>\n\n\n\n
said hypopara negatively impacts their work or education.<\/div>\n<\/div>\n\n\n\n
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79%<\/strong><\/h4>\n\n\n\n
revealed it affects their ability to do physical activities, e.g., lifting heavy items and exercising.<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Relationships and life experience<\/h3>\n\n\n\n
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66%<\/h4>\n\n\n\n
acknowledged it impacts their ability to travel or go on holiday.<\/div>\n<\/div>\n\n\n\n
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53%<\/h4>\n\n\n\n
said it affects relationships with partners or loved ones.<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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\u201cHypopara can come knocking at any time and disrupt even the simplest tasks.\u201d<\/em><\/em><\/em>

Female, aged 64<\/em><\/em><\/em><\/div>\n<\/div>\n\n\n\n
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\u201cI try not to show my family so carry on doing what I can, but cooking family meals is tough<\/em><\/em>.\u201d<\/em><\/em><\/em>

Female, aged 68<\/em><\/em><\/em><\/em><\/em><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Managing a chronic condition<\/strong><\/strong><\/h2>\n\n\n\n

Living with hypoparathyroidism often means managing ongoing healthcare needs alongside everyday life.<\/p>\n\n\n\n

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34%<\/h4>\n\n\n\n
reported experiencing an emergency hospital admission related to hypopara in the previous year.<\/div>\n<\/div>\n\n\n\n
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50%<\/strong><\/h4>\n\n\n\n
attended specialist appointments at least every few months, including 12%<\/strong> who went monthly or weekly.<\/div>\n<\/div>\n<\/div>\n\n\n\n
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\u201c<\/em>Miserable and afraid because you never know when your life will be at risk again when calcium crashes.\u201d<\/em><\/em>

Female, aged 57<\/em><\/em><\/div>\n<\/div>\n\n\n\n
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\u201cIt makes me feel like I am not present in my own body. It feels like I\u2019m not in control of my own muscles.\u201d<\/em><\/em><\/em>

Female, aged 36<\/em><\/em><\/em><\/div>\n<\/div>\n\n\n\n
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\u201cMy bones are extremely brittle. I’ve broken about four bones this year. I’ve had to have surgery on my hip as a 29-year-old.\u201d<\/em><\/em><\/em><\/em>

Male, aged 30<\/em><\/em><\/em><\/em><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n
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Behind every statistic is a unique personal experience<\/h2>\n\n\n\n

The following stories showcase the realities of living with hypoparathyroidism, from the challenges people face to the ways they adapt, advocate and navigate life with the condition.<\/p>\n\n\n\n

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From Social Butterfly to Living on a Knife’s Edge – Gillian’s Story<\/h3>\n\n\n\n

I’ve had problems with my thyroid since I was young. I had my first thyroid operation when I was just 13, and then another in my twenties after another goitre on my thyroid began pressing on my windpipe. Years later, I needed a third operation following a diagnosis of thyroid cancer on the remaining part of my thyroid gland.<\/p>\n\n\n\n<\/path><\/path><\/svg><\/span>Download<\/span><\/a>\n<\/div>\n\n\n\n

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\n\"Gillian\"\n<\/div>\n\n\n\n
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By Gillian, aged 62, living in Newcastle<\/em><\/em><\/em><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n

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Find out more about living with hypopara<\/h2>\n<\/div>\n\n\n\n
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