In October, Judith 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, Bridget 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.
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 build a 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
Top | Home | Hypoparathryoidism | Resources | News | Members | Disclaimer | Privacy | Copyright |