Deputy CEO, Shop Manager, Patient Support
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.
Chief Operations Officer & Membership
Mandy has been actively involved with Parathyroid UK from the start. She supports Liz in the day to day running of the organisation and is also in charge of our growing membership database.
‘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.’
Isabel Wray da Silva
Creative and Project Manager, Lead Pregnancy Sub-Committee
I was diagnosed with chronic post-surgical hypoparathyroidism following my total thyroidectomy surgery for thyroid cancer at age 15. This also left me with chronic hypothyroidism. I take life-saving medication daily, a consequence of which has left me with chronic kidney disease.
I joined the Executive Committee of Parathyroid UK in 2012. My work includes producing the patient/consultant/event material, the medical alert card, the WHAD logo, attending awareness events, speaking at conferences, patient advocacy and representing the charity at a parliamentary reception at the House of Commons. As Lead of the Pregnancy Working Group I help to develop and disseminate information to patients and professionals.
Lead Hypopara Ireland, Facebook co-ordinator, Patient support
I am an occupational therapist living in Ireland with my husband and children. I love the great outdoors, feeling the sun on my face and travelling. I have had post- surgical hypopara for the past 16 years following a total thyroidectomy for Hashimoto’s disease.
‘I am a hypopara committee member, our Irish Coordinator and the UK Facebook Co-ordinator. I support new and existing members through our facebook group and I work on awareness projects at Parathyroid UK as well as advocacy projects across Europe. I am passionate about this work and proud to represent and be a member of Parathyroid UK.’
Europe Representative, Awareness Officer, patient support
‘I was diagnosed with Graves’ disease at the age of 16. I am now living with Hypoparathyroidism and other complications due to my thyroid surgery. I’m married with two adult daughters who both live and work in the UK, whilst for health reasons (and being half Spanish) I, along with my husband, moved to the Spanish coast.
I am passionate about educating others on Hypoparathyroidism. It’s the only way we will get the medical community to understand our day to day living with this rare and sometimes complicated disease.’
‘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.’
Event Management, Patient Support
‘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 & 7 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.’