PACES / Patient Advocacy
Dear Doctors,
I just wanted to take a moment to thank you for the care and dedication you've shown while preparing for your PACES exam. It has been a privilege to be a part of your learning journey, and I truly appreciate your professionalism and kindness. I also want to thank you for visiting my website - your support means a lot to me. Your commitment to becoming better doctors will make a difference to so many lives, and I wish you all the best in your exams and future careers.
With gratitude,
Isabel
​
My patient advocacy work
​
I am an independent hypoparathyroidism patient advocate and have featured in several awareness campaigns. I have experience of talking to medical professionals about being a hypopara patient and I participate in postgraduate medical education alongside doctors. I’ve also been involved in patient advocacy group work, and am well connected to other hypoparathyroidism patients worldwide.
​
If you are a medical professional interested in carrying out research on hypoparathyroidism and pregnancy, both I and other hypopara mums are patient experts who live with and navigate this ‘orphan disease’. We can provide valuable insights to help you in your research for treatments and better care.
​
Feel free to contact me to discuss your requirements.
​
See more of my patient advocacy portfolio on my LinkedIn profile: www.linkedin.com/in/isabelwray
What is hypoparathyroidism?
​
Hypoparathyroidism, or ‘hypopara’ for short, is a rare condition characterised by low blood calcium (hypocalcaemia), due to the insufficient secretion of Parathyroid Hormone (PTH).
​
PTH is essential to regulate blood calcium. Without PTH, the body cannot function normally. Calcium is essential - not just for our bones and teeth, but for every single cell in our body which needs calcium to function. It is needed for cognitive function, for the nervous system and to keep the heart beating.
​
There are different types of hypoparathyroidism: transient, congenital, or surgically acquired. The most common cause of hypoparathyroidism is by neck surgery, for example, for thyroid or parathyroid surgery.
​
Hypoparathyroidism is a poorly understood, chronic condition. It is an incurable disease which is life-threatening if not treated or managed correctly.
​
Currently there is no readily available treatment for hypoparathyroidism in the UK. Instead, hypopara patients have to manage the side effects of low blood calcium (hypocalcaemia). Having low blood calcium is very serious, and can lead to seizures, even death. A severe hypocalcemic crash is an incredibly frightening and traumatic experience; emergency IV calcium must be administered in hospital.
​
During pregnancy calcium levels need careful monitoring, ideally every three to four weeks, or more if unstable. It’s vital that levels are maintained at the low normal reference range to not adversely affect the developing foetus, and ensure hypocalcaemia and hypercalcaemia are avoided.
Managing hypoparathyroidism during COVID-19
​
In April 2021, the European Society of Endocrinology (ESE) updated its guidance on COVID-19. In its hypocalcaemia section it states: ‘Since hypocalcaemia occurring in COVID-19 may be severe and potentially life-threatening, all patients with post-surgical hypoparathyroidism should be monitored carefully and never discontinue or down titrate their treatment (for example, for side effects) prior to consulting their endocrinologist.[1]’
​
The need for medical research and better pre and postnatal care
​
From my experiences, and those of other hypopara mums, there is a pressing need for more medical research into hypoparathyroidism and pregnancy, as well as better care in maternity settings. In 2019, the year before my daughter, Maya, was born, a research paper was developed called, ‘Hypoparathyroidism in pregnancy: evidence-based recommendations for management’. The concluding paragraph of these recommendations had stated: "There is an urgent need for prospective studies in hypoparathyroidism in pregnancy in order to enhance the quality of care available today.”[2]
My daughter was born during the first lockdown in 2020 and like many, my antenatal care was severely compromised. I had 4 calcium blood tests in 9 months instead of blood tests every 3-4 weeks. I was left to self-manage my calcium levels blindly. Even though requested by my endocrinologist, and due to lack of hypopara knowledge, both my baby and I were refused a calcium blood test postpartum. As a result I was re-admitted to hospital suffering from hypERcalcemia.
PARAT, an ESE Educational programme on Parathyroid Disorders, have since developed a patient information leaflet as well as a leaflet for the medical profession to assist them in managing their hypopara patients.
​
​
For Patients - download here or click on image to view: A Patient Parathyroid Disorders Guide During Preconception, Pregnancy and Lactation.
​
For Doctors - download here: Managing Parathyroid Disorders: Preconception, pregnancy and lactation
​
In addition, you will find relevant up to date information and video links on the ECE website:
​
If you’re interested in conducting research into hypoparathyroidism and pregnancy, or keen to speak to other hypopara mums, please contact me.
Page 6 of 16
Conclusion
​