World Hypopara Awareness Day (WHAD) is an annual global awareness and education event, held on 1st June.
Every year, events are organised by hypoparathyroidism (or hypopara) patient groups and supporters around the world who want to make a difference. We encourage everyone to try to organise an activity or event to draw public attention to thi srare and challenging conditon.
The American Hypoparathyroidism Association was founded in 1994 and with their support, Parathyroid UK ( formerly Hypopara UK) was set up in 2005 with Hypopara Nordic arriving later that year. The leaders of these 3 organisations, patients themselves, finally met face to face ten years on, in 2015, at the First International Hypoparathyroidism Conference held in Florence - a very emotional occasion!
When these groups began, hypoparathyroidism was a largely unrecognised condition. Today, although better known it is still poorly understood and remains a challenging condition to diagnose and manage.
In a relatively short time considerable advances have been made. The first global clinical trial of PTH 1-84, a full length replacement parathyroid hormone trial took place in 2010 and the first clinical guidelines for the treatment of hypoparathyroidism were finally published in 2015 by the European Society for Endocrinology, and other guidance in 2016 as a result of that meeting in Florence. There are still problems accessing PTH treatment but new treatments are in the pipeline be and we hope that these will help to improve patients' lives.
Liz Glenister of Parathyroid UK first established a Hypopara Awareness Day in the UK in 2006 which eventually became World Hypopara Awareness Day in 2010. June 1st was agreed upon to coincide with the annual Hypopara conference held in the USA. The logo was produced by Isabel Wray of Parathyroid UK for the free promotion of all hypopara organisations around the world.
Hypoparathyroidism (or hypopara for short) is a rare and permanent condition that is challenging to live with. There are different forms ( genetic, autoimmune, post surgical etc ) but all produce similar symptoms and are caused, in one way or another, by damaged or malfunctioning parathyroid glands in the neck. Post surgical hypopara following surgery to the neck ( ie a thyroidectomy) is the most common form.
The body has 4 parathyroid glands because they are essential to life; their sole job is to regulate levels of calcium in the blood by producing exactly the right amount of parathyroid hormone (PTH) as needed. Calcium is an important electrolyte and mineral which needs to be kept carefully balanced. Symptoms of hypocalcaemia are similar in effect to hypogylcaemia in diabetics - hypos and crashes requiring instant calcium.
Treatment with vitamin D and calcium supplements is not ideal, causing long term renal problems. A new replacement full length parathyroid hormone (PTH 1-84) called Natpara now exists and has been approved by the FDA and then the EMA in 2018 but is still not widely available.
Managing calcium levels involves considerable guesswork and frequent monitoring by blood test. As in diabetes, levels can fluctuate and be difficult to control. Unlike diabetes, patients with hypoparathyroidism have no home testers to help them manage this challenging condition.
© Liz Glenister, Parathyroid UK . Updated 2021