Media Release for June 1st 2014 - World Hypopara Awareness Day
Sunday 1 June 2014 for immediate release
Sunday 1 June is World Hypoparathyroidism Awareness Day (WHAD).
Living with Hypopara: Pregnancy and Childbirth
To mark this day, Hypopara UK is this year focusing on pregnancy, childbirth and breastfeeding in hypopara. There is little research in this field and many doctors have never had to manage a hypopara woman, let alone a pregnant one! The stories we bring you show how four young women met this demanding challenge with a positive attitude - and the most beautiful results. You can read their stories on our website: http://hypopara.org.uk/resources.php?id=252.
What is hypopara?
Hypopara (hypoparathyroidism) is a rare endocrine condition in which not enough parathyroid hormone is produced which results in low calcium levels in the body. Like diabetes, it can be life-threatening if not properly treated. Unlike diabetes, patients with hypoparathyroidism have no replacement hormone or home testers to help them manage their fluctuating levels.
The most common cause of hypoparathyroidism is as a result of accidental damage or removal of the parathyroid glands during neck surgery, but it can also be inherited or associated with autoimmune disorders. In some cases the cause is not known (idiopathic). Some people are born with it (congenital hypopara) and others are diagnosed later in childhood or as adults. In all cases patients need to take medication (most commonly calcium supplements and a vitamin D analogue called alfacalcidol) for life.
Liz Glenister, Founder and CEO of Hypopara UK, says: ‘This is a difficult condition that needs careful long term management and regular monitoring. Even those with stable calcium may find that levels are liable to change and may need adjusting at different times in their lives or in response to different factors such as diet, infection, exercise, pregnancy, menopause etc. The effect of symptoms on patients may be physical, emotional and neurological and should not be underestimated.’
Allyson, one of the patients interviewed for the ‘Pregnancy in Hypopara’ project, says: “While I received great care, I think that it is vital that GPs and midwives are made more aware of this condition and how potentially serious it can be. I also think there should be a protocol for postpartum testing and research done on postpartum hypopara mothers as there seems to be a common theme of high calcium levels post birth but with limited understanding as to why this happens.”
About the WHAD logo
The design was commissioned for Hypopara UK by our Creative Officer, Isabel Wray, who developed the concept. It depicts a butterfly with dotted lines spreading out around the globe to represent disseminating information worldwide. It was first launched on the Hypopara UK Facebook page in advance of WHAD 2014.
The designer, Pete Hambling, says: ‘There's a beautiful precedent when designing for anything to do with the thyroid: the butterfly, so perfectly appropriate, is such a strong image in itself and yet it lends itself to so many variations and reinterpretations without becoming stale.
‘From there the design almost took care of commissioned the job. Obviously enough, the brief stated that World Hypopara Awareness day is about disseminating information worldwide, so the dotted lines represent that information spreading as far and wide as possible, and the fact that the knowledge they spread is wider even than the globe itself is designed to evoke the ideal; that awareness blankets the planet so thoroughly it becomes a no-brainer, and the hypoparathyroidism can be treated with the same efficacy and ease as those lucky conditions that don't need a charity to raise awareness in the first place. That we get an exciting firework 'whoosh' out of that is an added bonus!’
About HPTH UK
Hypopara UK was founded in July 2005 and is the only organisation dedicated to improving the lives of people living with hypoparathyroidism and other parathyroid conditions in the UK. It provides support, information and advocacy for people with all parathyroid conditions, their families, friends and carers. It is also a resource for health professionals with an interest in parathyroids and calcium management and it works closely with endocrinologists across the UK and worldwide.
For more information about Hypopara UK please contact Liz Glenister, CEO, Hypopara UK (email: firstname.lastname@example.org or tel: 01342 316315) or Judith Taylor, Public Relations Officer, (email: email@example.com or tel: 01359 221916)
Hypopara UK has produced a patient leaflet about hypoparathyroidism in conjunction with the Bone and Mineral Special Interest Group of the Society for Endocrinology. To download the leaflet, please go to: www.hypopara.org.uk.
If you would like to interview any of the people whose stories are on the website please contact Judith Taylor, Public Relations Officer, Hypopara UK (email: firstname.lastname@example.org)