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World Hypopara Awareness Day (WHAD) is an annual global awareness and education event, held on 1st June.
Every year, events are organised by hypopara patients groups and others around the world who want to make a difference. We are encouraging everyone to try to organise an activity or event to draw public attention to hypopara. See 2017 for events.
The American Hypoparathyroidism Association was founded in 1994 and with their support, Hypopara UK was set up in 2005 with Hypopara Nordic arriving later that year. The leaders of these 3 organisations, patients themselves, finally met 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, while it is still rare and still challenging to diagnose and treat, 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. New hypopara organisations are being founded each year around the world.
Liz Glenister of Hypopara 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 annnual Hypopara conference held in the USA. The logo was produced by Isabel Wray of Hypopara 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. Originally developed by NPS Pharma, Natpara was acquired by Shire Pharmaceuticals in 2015and they are working closely with hypopara organisations to bring Natpara to the patient. It is already in use in the USA. In Europe, it has just recieved approval by the EMA.
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- Hypopara UK 2016