PERNICIOUS ANAEMIA SOCIETY

Changing the way Pernicious Anaemia is diagnosed and treated

Pernicious anaemia treatment during COVID-19

Guidelines, Articles & Resources
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Pernicious Anaemia

What is Pernicious Anaemia and what does it do?
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The Chair's Blog

Martyn Hooper’s experiences as chair of the Society
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Healthcare Professionals

Information to help you and your patients

Latest News

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

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Do come along and join us, and other other members of the society for a chance to share your experience of living with Pernicious Anaemia in a supportive and friendly environment.

Fundraising

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Raise much needed funds for the society by holding an event or get yourself sponsored.
Run, rode, swim or hold a bake sale. Check out our Fundraising page for ideas.

Volunteer

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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.

FAQ

If you have been recently diagnosed with Pernicious Anaemia, or if you suspect that you might have Pernicious Anaemia you will probably have lots of questions that you would like answers to.
What is Pernicious Anaemia ?

Pernicious means ‘ruinous, destructive and fatal’. Pernicious Anaemia was so named because it used to be fatal. It took doctors over 100 years from the disease first being identified to find a cure and a further twenty years to fully understand the condition.
People who have Pernicious Anaemia lack intrinsic factor and so cannot absorb B12 from food that has been eaten.
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What's the difference between B12 Deficiency and Pernicious Anaemia ?
Vitamin B12 deficiency can be dietary-related (vegans and strict vegetarians) or non-dietary related for which there are several causes. Pernicious Anaemia is the most common cause of a vitamin B12 deficiency.
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 do you get Pernicious Anaemia ?
The test used to diagnose Pernicious Anaemia is the anti-intrinsic factor antibody test (IFAB).
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 ?
Vitamin B12 injections are still the preferred method of treating Pernicious Anaemia. There are many other types of treatments available including sub-lingual sprays, drops and lozenges along with skin patches and nasal sprays but the efficacy and cost–effectiveness of oral treatment in wider population-based settings has yet to be established.
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What are the symptoms of Pernicious Anaemia ?
Common symptoms include extreme fatigue, weakness, shortness of breath, brain fog, tingling, numbness, beefy tongue, depression, irritability, mood swings, burning feet, dizzyness, loss of appetite, problems concentrating.

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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

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