PERNICIOUS ANAEMIA SOCIETY
Changing the way Pernicious Anaemia is diagnosed and treated
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The Patient Experience in Diagnosis and Treatment of Autoimmune Gastritis and Pernicious Anaemia
Our guest blogger this month explores the important topic of diagnosis and treatment through patient experience. This is particularly relevant today as it is increasingly...
One History of Pernicious Anaemia
You will note immediately that I have done two things in the title, 1) to use the word 'one' rather than 'a' or 'the'. I make no pretence that this article is a definitive...
Bringing about change
Raising awareness and facilitating communication and research Bringing about change is the focus of the Pernicious Anaemia Society. To do this, the PAS liaises with outside...
The results are in! We have the Top 10 Research Priorities for Pernicious Anaemia!
Following the Pernicious Anaemia James Lind Alliance Priority Setting Partnership (PSP) workshops, we now have our Top 10 Research Priorities; questions that patients, clinicians...
It’s decision time!! The top 10 PA Research Priorities
After many months of work, the Pernicious Anaemia JLA PSP has reached the most important point in the partnership to date – the workshops. The aim of the workshops is for the...
Have Your Say! Pick YOUR Top 10 PA Research Priorities
We need your help to shape the future of Pernicious Anaemia research Last spring, we launched a survey where we asked you to tell us what questions relating to Pernicious Anaemia...
Why, what, how: the JLA PA Priority Setting Partnership
The James Lind Alliance Pernicious Anaemia Priority Setting Partnership, Steering Group and the survey - What's it all about? In recent weeks we’ve been asking you to complete...
Have Your Say On PA
When the pandemic led to changes in patients’ treatment, we became aware that far too many patients were suffering harm because either their treatment was stopped, or they were...
Long COVID and Pernicious Anaemia
Last Updated: 21 February 2021: You may remember that last month we wrote to the Chief Medical Officers in the UK to point out that the symptoms of Long-Covid were remarkably similar to those of Vitamin B12 Deficiency and that..
Did you know ?
%
Of patients waited 5 years or more for diagnosis
%
Of patients were initially misdiagnosed
%
Of patients are unhappy with their treatment
Get Involved
Member Support Groups
Come and join us, and other other members of the society to share your experience of living with Pernicious Anaemia in a supportive and friendly environment.
Research
Pernicious Anaemia Priority Setting Partnership
We have the Top 10 Research Priorities for Pernicious Anaemia!
Volunteer
Help out! Let us know what you can or want to do to help the PAS and all our members
Become a Member of the Pernicious Anaemia Society
With your help we can continue to do our valuable work, supporting those that need it and campaigning to secure future improvements in detection and treatment of this illness. The more members we have the bigger our voice will be in getting the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed. Join us and help us bring about this much needed review. Your membership fee or donations go towards the running of society, but also help us to fund research projects, awareness campaigns and many other activities.
Find Out More
FAQ
What's the difference between B12 Deficiency and Pernicious Anaemia ?
Pernicious Anaemia is caused by either the patient not producing Intrinsic Factor that is needed to bind with vitamin B12 from food before it enters the blood stream or the Intrinsic Factor is being produced but is then destroyed by antibodies to the Intrinsic Factor – auto-immune Pernicious Anaemia. Because the patient is either not producing Intrinsic Factor or is destroying the Intrinsic Factor that has been produced the B12 cannot be absorbed from food.
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How is Pernicious Anemia diagnosed ?
If the test is positive, then it is 95% certain that the patient will have Pernicious Anaemia. However, it will identify only 50% – 70% of patients with the antibodies. So, if you test positive for the antibody you will almost certainly have Pernicious Anaemia. But is it is negative it does NOT rule our Pernicious Anaemia.
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How is Pernicious Anaemia treated ?
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What are the symptoms of Pernicious Anaemia ?
Our Mission
To secure a full and comprehensive review of the way in which Pernicious Anaemia is diagnosed and treated that will lead to more timely diagnoses and better treatment