PERNICIOUS ANAEMIA SOCIETY
The problem of patients being told that they will not be receiving their injections due to the risk of spreading the Covid-19 virus has been the sole topic in telephone calls and...
In the last two days we have received over thirty telephone calls and many emails and comments from patients who have been told that their surgery is no longer providing...
Exciting sporting events for the PAS are well underway 2020 is an exciting year for PAS with regards to sporting events around the country and abroad. Our aim is to get PAS...
Last week, PAS chairman, Martyn Hooper MBE along with PAS office manager Karyl Carter met with the Chief Medical Officer for Wales, Dr. Frank Atherton, and members of the Welsh...
Dedicated Helpline Telephone Number My thanks to those who have volunteered to help man the telephone helpline service that we offer to our members. We receive a lot of calls...
Making the guideline a priority We are busy organising our Nationwide Political Campaign to bring pressure on NICE to make producing a Guideline on Pernicious Anaemia a priority....
Did you know ?
Of patients waited 5 years or more for diagnosis
Of patients were initially misdiagnosed
Of patients are unhappy with their treatment
Member Support Groups
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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 ?
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 ?
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 ?
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 ?
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.
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.