Living with Hypoparathyroidism

To mark World Hypoparathyroidism Day 2011 we published a collection of patients' stories called the  'Living with Hypoparathyroidism' project . This was launched to raise awareness and understanding about what it is really like to live with ithis challenging and rare condition and to build a useful resource for doctors, researchers, patients and families. The focus in 2011 was on the post surgical experience while in 2012 the spotlight was on all the other forms of hypoparathyroidism - idiopathic,Lasautoimmune, familial and more.  

To read the stories please click here

We are adding to this resource all the time so if you would like to help raise awareness about your particular condition 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  judith here

• 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 HPTH? 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?

Thank you for helping us to raise awareness about hypoparathyroidism