World Hypopara Awareness Day

World Awareness Day 2016

Hypopara UK are delighted to be invited to mark World Hypopara Awareness Day 2016 in Switzerland. Our representative, committee member Ray Finlay will be presenting a talk on all aspects of living with hypopara, and about Hypopara UK itself, to Shire Pharmaceuticals, manufacturers of PTH 1-84 Natpara.

Here in the UK, our focus this year is on diet in hypopara in our campaign Food MattersWe are encouraging everyone to get behind the campaign and try to organise an activity or event to draw public attention to hypopara. 

On June 1st we’ll be holding our mugshot campaign, asking you to post your mugshot with your mug of milk (dairy or plant based of course – which is your favourite?) to our World Hypopara Awareness Day page on facebook.

Use your own mug or help us even more and buy a mug from our shop with the beautiful world awareness day logo - you can get Awareness Day T-shirts, baseball caps and bags too!

Thinking of organising an event? Click here for ideas on how you can get involved.

 

World Awareness Day 2015

We are marking the  day in 2015 with a new World Hypopara Awareness Day website featuring links (via logos) to all the world's hypopara organisatons as a visual reminder of our global presence and to help new patients to find us. We are also opening our online shop and selling our first hypopara T-shirts bearing our World Awareness Day logo.

 

World Awareness Day 2014

This year we have collected and published the stories of young women talking about their experiences of pregnancy, childbirth and breastfeeding. This is an important project as very little research on managing Hypopara patients in pregnancy exists.

 

World Awareness Day 2013

We continued to add  patient stories to our 'Living with Hypoparathyroidism' collection which you can read here

Hypopara patient Emma Thomas told her story on the radio. You can listen to it here 

 

World Awareness Day 2012

This year we have added to our collection of patient experiences, focusing on those with types of hypoparathyoridism that are NOT caused by surgery - genetic, autoimmune and idiopathic. You can read them here

 

Awareness & Information Events 2011

In October, PR Officer Judith Taylor flew to Newark, USA to attend the first AGM of the Thyroid Cancer Alliance (TCA), an international coalition of major, national advocacy organisations who represent thyroid cancer patients. It includes organisations from the USA, Canada, Argentina, France, Germany and the Netherlands as well as the UK.

In November, Project Officer Bridget O'Connor went to Newark, Nottinghamshire as well as to Kings Mill Hospital in Nottingham itself, where local consultants spoke to both audiences on thyroid
and parathyroid issues.

In December, Judith was out and about again in London, displaying our publicity materials and leaflets at two annual British Thyroid Association (BTA) meetings in London.

 

World Awareness Day 2011

Our focus this year is on surgery and so we have chosen to mark Awareness Day by highlighting the problem of post-surgical hypoparathyroidism.

On June 1st, we will be launching a new project called 'Living with Hypoparathyroidism' to consolidate and build on our collection of stories submitted by patients who lost their parathyroid function because of thyroid, parathyroid or laryngeal surgery.

There have been recent estimates that as many as two to seven percent of people who have their entire thyroid gland removed may end up with permanent hypoparathyroidism. And many more have low blood calcium or hypocalcaemia following surgery which corrects itself over the following days or months. National surgical registries from the UK (British Association of Endocrine and Thyroid Surgeons (BAETS) and Scandinavia show that around 30%* of patients experience at least temporary low blood calcium, or hypocalcaemia, after having all of their thyroid gland removed.

But we are more than just statistics, and that is why we decided that it was time to share our experiences publicly.

If you would like to take part and add your story or video please click here .


  • The British Association of Endocrine and Thyroid Surgeons (BAETS) The Third National Audit Report 2009. BAETS 2009

Bergenfelz A, Jansson S, Kristoffersson A, Martensson H, Reihner E, Wallin G, et al. Complications to thyroid surgery: results as reported in a database from a multicenter audit comprising 3,660 patients. Langenbeck's archives of surgery / Deutsche Gesellschaft fur Chirurgie. 2008 Sep;393(5):667-73


   
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