What is Hypopara Mums?
Founded from lived experience, Hypopara Mums is an independent patient-led initiative focused on improving the patient and maternity journey in hypoparathyroidism.
Drawing on both personal experience and the collective expertise of a global community spanning 45 countries, it supports awareness, medical education and collaboration to help ensure that patient perspectives inform understanding, care and research.
“A Hypopara Mum is someone who has been through pregnancy or pregnancy loss since receiving a hypoparathyroidism diagnosis”. Isabel Wray da Silva
About me
Hello I'm Isabel...
Welcome to Hypopara Mums, a website which I created especially for women with hypoparathyroidism who are going through pregnancy, and beyond. The ‘beyond’ part of the journey is equally important. Perhaps, as a woman with hypoparathyroidism, you may have suffered a miscarriage. Or you might be hypopara and dealing with breastfeeding, the challenges of motherhood, or the menopause. This site is a resource full of useful information to help empower you on your journey.
Photo by Sandro Georgi Freelance Photographer
Using this site...
There’s a page each on this site for different people who may come into contact with a hypopara mum. So there’s a page for children, to help them better understand this chronic illness and know what to do, or who to call in a medical emergency. I talk, too, about my volunteer experience of supporting others with the same condition. And there’s a page for medical professionals, interested in collaborating with us for clinical research.
Purpose of this site...
There's very little medical research available on hypoparathyroidism and pregnancy. It's only very recently that the European Congress of Endocrinology (ECE) published a patient information leaflet on the subject (updated February 2022), and this is the only official patient guidance available.
You can download it from here: A Patient Parathyroid Disorders Guide During Preconception, Pregnancy and Lactation.
There's also a guide for doctors, which you can download here and take to your appointments:
Managing Parathyroid Disorders: Preconception, pregnancy and lactation
So my aim for this site is to be a much-needed support for mums with hypoparathyroidism, and the first of its kind in the world.
This site works alongside the ‘Hypoparathyroidism: Pregnancy and Beyond’ public Facebook page (searchable via ‘@thehypoparamum’) and the ‘Hypopara Mums’ private Facebook support group. Both are positive, multi-lingual spaces for advice and networking.
At the last count, we have hypopara mums from 45 countries in our Facebook group: Albania, Algeria, Argentina, Armenia, Australia, Austria, Bangladesh, Belgium, Brazil, Canada, Chile, Columbia, Denmark, England, France, Germany, Greece, Holland, Honduras, Hungary, India, Ireland, Israel, Italy, Jordan, Kenya, Malaysia, Mexico, New Zealand, Nigeria, Norway, Panama, Peru, Poland, Romania, Saudi Arabia, Scotland, Serbia, Slovenia, South Africa, Spain, Sweden, Tasmania, United States of America and Wales.
As a collection of patient experts, under the care of consultants worldwide, we have a vast amount of experience. Sharing that experience gives women like us a voice, raising awareness and understanding - and hopefully opening the way for new, innovative treatments.
What this site isn’t
'Hypopara Mums’ is not a charity or a not-for-profit. Nor is it aligned with any other charity or medical organisation.