CEO & Management Committee

I founded Parathyroid UK (formerly Hypopara UK) in 2005 after living with undiagnosed and uncontrolled hypoparathyroidism for many years, following surgery for thyroid cancer in 1992. I’d been told there were no other patients like me so initially I set up a forum in the hope that isolated patients could find each other and share experiences.

Having experienced total paralysis after my operation, I also wanted to prevent this trauma from happening to others, and to provide information and support that simply didn’t exist at the time. So few doctors had even heard of hypoparathyroidism that I spent a lot of time raising awareness about the condition too. I had no idea what a battle I’d taken on.

Today, I am very proud to run this national organisation with the help of our fantastic volunteers and medical advisors. We all work closely together and, as Parathyroid UK, we are deeply committed to improving the lives of people with all parathyroid conditions.

Living with hypopara is extremely challenging. An invisible daily war with my own body has reluctantly become the norm since the age of 24.  After receiving years of support from Parathyroid UK it means a great deal for me to be able to give something back and to help those who have to live with this condition and the obstacles it presents on a daily basis.

As well as being Deputy CEO I have supported and advised patients in our facebook support group for some years and I also manage the Parathyroid UK Shop, raising awareness and funds from stock now bearing our new name and logo.

I’m a 31 year old office manager living in London. I  was diagnosed with Hypoparathyroidism in 2020 after thyroid surgery and have had a very difficult time with chronically low calcium levels and many A&E admissions. This community has been invaluable to me in teaching me about my condition and helping me live with it, so I am looking forward to supporting and giving back.

Mandy has been actively involved with Parathyroid UK from the start and supporting  Liz in the day to day running of the organisation. Currently she is in charge of our large membership database and exhibits at conferences.

‘I live in Scotland. I had a total thyroidectomy in 2003 due to Grave’s Disease, which resulted in Hypoparathyroidism. I found Liz and the website in 2006 and finally began to find answers to my questions. I felt the need to get more involved soon after and now give as much time as I can to Parathyroid UK.’

‘I was diagnosed with thyroid cancer in 2016 and formally diagnosed with post-surgical hypoparathyroidism in 2018.  I am now on Teriparatide and seeing slightly more stable calcium levels.

I cannot stress enough how valuable the support from Parathyroid UK has been. It has armed me with the knowledge, strength and confidence to fight for my right to be heard and treated. I look forward to giving back as much as I have received.

I hope through this organisation we can collectively educate others about this rare disease and get the attention it deserves. So much has been done and we have more to do but there is comfort in knowing that we are moving in the right direction.’

‘In August 2009, I had a routine thyroidectomy for Grave’s disease and ten days later walked out with a bag full of calcium not understanding what had happened or what was to come.  I found this site; suddenly I could communicate with others who understood my fears, had walked my path and I no longer felt alone. The advice and support I found here enabled me to carry on through the bad days.

This inspired me to volunteer for Parathyroid UK; being so rare there is great value in coming together to share experiences, offering support and advice and striving to get the best treatment for all.’

‘I live in Sussex with my wife, Liz, and I am also her carer. Following family tradition, I dutifully trained to be a surgeon but finding I couldn’t stand so much blood, gave it up for my real love, painting. I taught art for 20 years before retiring due to M.E. and I now paint whenever I can find the time – with 4 daughters & 8 grandchildren life as a retired person can get pretty busy.

For Parathyroid UK I support Liz, help out at conferences and meetings and as Treasurer, I keep the accounts in order.’

‘I am 30 years old and have had hypoparathyroidism for 9 years now after a thyroidectomy for Graves Disease. I currently work full time and I am also studying natural medicine and holistic therapies. I am very passionate about helping those struggling with their health.’

My name is Tania. I’ve only had hypoparathyroidism  for the past 18 months so certainly am no expert but I am trained as a nurse and have a post graduate qualification in Nutrition from St. Mary’s University Twickenham. I answer diet related queries in the hypopara support group and I write articles for the website.