Information for Carers or Family members

The Pernicious Anaemia Society understands that contrary to what most medical professionals believe, receiving injections of vitamin B12 does not automatically bring with it a total relief from the symptoms of the condition.

As a carer or family member of a patient who has Pernicious Anaemia it is important that you understand this as most medical professionals believe that once treatment begins then the symptoms of PA will disappear. This isn’t the case.

Pernicious Anaemia affects different people in different ways. Some patients experience the symptoms just a little or even not at all. Others will still experience the worst symptoms of the disease even after treatment to rectify their B12 deficiency has started. For these people their lives will often be transformed because of the impact the disease on their lives.

It’s difficult to explain to people who don’t have Pernicious Anaemia just how the condition affects everyday living if the patient is still experiencing the symptoms of the disease. The way in which the condition impacts on patients’ lives will depend on the severity of the symptoms still being felt by the individual. For some it may mean that they find themselves taking deep breaths occasionally; whilst others will be continually exhausted, unable to think clearly and have sudden mood swings. Many patients will be able to carry on living their normal life, but for others their condition and symptoms mean that they will have to make major life-changing decisions that might lead to domestic turmoil and/or career changes.

The key to living with or caring for a patient with Pernicious Anaemia is to identify and understand the symptoms of the disease. And that may mean that you will also have to make changes to the way you live your everyday life in order to accommodate the needs of the patient – and sometimes that can be quite a demanding thing to do.

Please read the list of symptoms here. And don’t forget, the Pernicious Anaemia Society doesn’t exist simply to cater for the needs of patients, we also offer advice and support for carers and family members as well. Please don’t hesitate to contact us if you require any further information.

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