Changing the way Pernicious Anaemia is diagnosed and treated

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Of patients waited 5 years or more for diagnosis


Of patients were initially misdiagnosed


Of patients are unhappy with their treatment

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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
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 caused by poor diet (strict vegans who wash root vegetables are an at risk group) or due to Gastric Atrophy where the lining of the stomach becomes thinner and no longer produces sufficient gastric juices needed for the proper absorption of food. Infections caused by Helicobacter pylori are one cause of Gastric Atrophy.

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 and makes healthy red blood cells or the Intrinsic Factor is being produced but is then destroyed by antibodies to the Intrinsic Factor that have also been made by the patient – 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 any animal product that the patient has eaten. And because he or she is unable to extract the B12 the end result is vitamin B12 deficiency caused by Pernicious Anaemia.
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How do you get Pernicious Anaemia ?
Pernicious Anaemia is caused by the patient being unable to extract vitamin B12 from food.

This is because the Intrinsic Factor that is needed to bind to the B12 before it is sent into the blood system is either not being produced or is being ‘killed off’ by antibodies that destroy any Intrinsic Factor that has been produced – the patient produced anti-intrinsic factor antibodies. Because the patient unwittingly produces these antibodies he or she is interfering with the autoimmune system. Pernicious Anaemia is an Autoimmune Disease just like Diabetes Mellitus Type 1, Hashimoto’s Thyroiditis, Lupus Erythematosus and Psoriasis. Many of our members not only suffer from Pernicious Anaemia but also have other autoimmune diseases.

There is a strong family link in Pernicious Anaemia. One of the most reliable indicators that a patient has Pernicious Anaemia is whether he or she has a family history of the disease.
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How is Pernicious Anaemia treated ?
Treatment is by replacement therapy of vitamin B12 usually by injections. There are many other types of treatments available including sub-lingual sprays, drops and lozenges along with skin patches and nasal sprays.

Simply swallowing B12 tablets bought from health food shops will not work as generally they are not strong enough. There is some evidence that people are able to absorb some B12 from tablets that are very highly concentrates of B12. You should always consult your doctor before trying any other replacement therapy to the one prescribed.

The most common complaint by members of the Pernicious Anaemia Society is that the treatment regimes in place around the world do not take into consideration the individual needs of the patient. Some of our members need much more frequent treatment than others. The society is currently working with clinical researchers to find out why this is so.
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What are the symptoms of Pernicious Anaemia ?
The usual symptoms associated with Pernicious Anaemia were unspecific and vague. Over the years the Pernicious Anaemia Society has produced more condition specific list of symptoms.

One of the old, less specific symptoms was shortage of breath that could be an indicator of a great many diseases. Over the years The Sighs has replaced the less specific ‘shortage of breath’ as being more descriptive of our members’ experience. Similarly ‘the strange tiredness’ is much more suggestive of Pernicious Anaemia than the older ‘tiredness & lethargy’.

Patients will experience all, some or a few of the symptoms but to various degrees of severity. We don’t know why this is but it is probably due to the individual’s physiology.

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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.

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