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Add your story

Living with Hypopara

To mark World Hypoparathyroidism Awareness Day on June 1st each year we publish new stories to add to our collection of patient experiences which we have called the  'Living with Hypopara' project. 

This project was launched in 2011 to bring together our collected stories and to raise awareness and understanding about what it is really like to live with this challenging and rare condition, and to build a useful resource for doctors, researchers, patients and families. 

To read the stories please click here


Hyperpara experiences

We now also collect the experiences of members with primary hyperparathyroidism which are currently available in our  newsletters.


If you would like to help raise awareness about your particular type of hypoparathyroidism, or hyperparathyroidism you can find out how to add your story here:


How to add your story

If you would like to  tell us about your experience and what it has meant to your life there are 2 ways to add your story to the collection: 

  • Write your story, using the questionnaire below if you want to, and email it to us 
  • Make a video using a phone, camera or camcorder, and upload it to our HPTHUK1 YouTube channel here


Here are a few questions to help you get started:

  • When did you first realise something was wrong? (Please give month and year)
  •  What were your symptoms?
  •  When did you go to the doctor and what tests were done?
  •  At what stage were you referred to an endocrinologist or geneticist?
  •  When were you diagnosed with PTHP? Did you have difficulty getting a diagnosis? (Please give month and year)
  •  What type of hypoparathyroidism do you have? (Put idiopathic if unknown)
  •  What does your treatment consist of? 
  • Have you had many calcium highs and lows since then? How do you cope?
  •  Has your life changed since you were diagnosed? 
  •  If there was one message you would like to give on World Hypoparathyroidism Awareness Day what would it be?
  • Please send a photo for the website or add one to your You Tube video


Thank you for helping us to raise awareness about parathyroid conditions

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