Wonderful news from fellow advocates in the UK….
Sallie Powell suffered for years from the debilitating symptoms of primary hyperparathyroid disease. Subsequently, in order to save others from having a similar experience to hers, she has been tirelessly lobbying for change in the UK and leading efforts to raise awareness to get guidelines established for primary hyperparathyroid disease. Sallie, with the help of fellow advocates, has succeeded!
Hyperparathyroid UK Action4 Change is pleased to announce confirmation from Professor Mark Baker, Director for Centre of Clinical Practice for The National Institute of Clinical Excellence, that he has been in discussion with colleagues in NHS England about the need for guidelines and Quality Standard for Primary Hyperparathyroidism and he states that they have now initiated the process to achieve this outcome.
Moving forward their group has been invited to participate in the process as stakeholders. Sallie informed us that she is writing to NICE today. She states, “we will endeavor to ensure the guidelines will enable doctors and endocrinologists to recognize and diagnose pHPT like never before. We have not come this far to accept flimsy guidelines.”
While the group’s primary focus is to advocate for guidelines the group serves several other purposes and brings together people who suffer from pHPT from all around the world. Here is the group’s mission as stated on their Facebook site Hyperparathyroidsm UK Action4Change:
Primary Hyperparathyroidism is the 3rd most common endocrine disease yet there are no regulated guidelines for diagnosis and treatment in UK for people suffering symptoms and presenting with blood calcium less than 3.
GP’s are generally unaware of the condition and believe it to be very rare. They are not aware of Normocalcemic Primary Hyperparathyroidism and the chances of diagnosis based on symptoms is even more rare leading to years of misery and very poor health in UK. This group intends to change recognition by GP’s and hospitals and make everyone aware of Hyperparathyroidism.
Members worldwide are welcome. We all need a place to come and talk and share our experiences and advice. The outside world can be very lonely when nobody has even heard of hyperparathyroidism. We intend to change that by raising awareness.
TOGETHER WE ARE STRONGER !
“Each victory, whether it be big or small. is a victory for all who have collectively suffered from the lack of awareness or expertise required to diagnose and surgically treat primary hyperparathyroid disease.” – Parathyroid Peeps
Wonderful. Sweet progress.
Let’s get this disease under control. My endo insists on
bisphonates to stall osteoporosis.
I want to control blood calcium and cure the basic cause.
This web site really has all the information I wanted about
this subject and didn’t know who to ask.