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Research
The society believes that there are many unanswered questions relating to Pernicious Anaemia. The forum has, over the years, been the place where members have sought answers to questions on many issues relating to PA be they in relation to the symptoms, treatment or understanding of the condition. And a great many of these questions remain unanswered because there is no credible scientific explanation as to why this or that happens.
The society is of the opinion that more research needs to be carried out on various aspects of Pernicious Anaemia so that doctors can fully understand the disease and offer treatment regimes that fully meet the individual needs of the patient.
We are currently taking part in a research programme being led by Dr. Bill Newman and Dr. Siddarth Banka of Manchester University. The research is seeking to explain the Genetic nature of PA. Many of our members have given blood or saliva samples and provided information on any family history to the researchers in order to help them identify any gene or genes that could help explain not only the hereditary nature of the disease, but also help them understand why people with P.A. also have a tendency to develop other auto-immune conditions such as Psoriasis, Rosacea, Vitiligo, Tinnitus etc.
But the society also realises that it has a duty to play more than just a passive and participatory role in any research being undertaken. We are fully committed to playing a pro-active role in commissioning research on subjects that have been identified by our members as being urgently in need of attention. Building on best practice in the voluntary sector, we have asked our members to identify and prioritise issues relating to Pernicious Anaemia that would benefit from a scientific explanation of the subject matter. Working with a leading Haematologist and Bio-Chemist we have written a research proposal that will lead to an understanding and explanation as to why some people need more regular treatments than others. The need for some patients to receive more regular injections than others is easily the subject of most concern to our members with many patients suffering because their doctor, understandably, refuses to sanction and prescribe more regular injections than is recommended by official guidelines. Providing scientific evidence to doctors that proves that some patients will need more regular treatments than others will hopefully allow patients to receive the treatment that he or she needs. The bid for funding has cleared two of the three hurdles towards receiving the funds needed for the research to begin. We will know by the middle of July whether we have been successful in or bid from the Big Lottery Research Fund.
Another research proposal that has been drawn up is that for developing a Diagnostic Tool for Pernicious Anaemia. Pernicious Anaemia is the only Long Term Medical Condition that doesn’t have a Diagnostic Tool that has been developed to allow doctors to reach a quick and accurate diagnosis of the disease. Many of our members travelled a long road before finally being diagnosed with P.A. This is not because of any medical negligence but because the symptoms associated with the condition are common with other medical diseases and this often leads doctors to investigate other possible diagnoses. Members of the society have already taken part in small focus groups to share experiences with some surprising results. Medical text books talk of ‘Breathlessness’ as being a symptom of the condition. Members prefer to use the term ‘The sighs’ that better explains what is being experienced. ‘The Strange Tiredness’ is a much better explanation of what the patient is experiencing than the often quoted ‘Tiredness, Lethargy, Exhaustion’. The proposal to fund the development of the Diagnostic Tool involves a Haematologist working closely with a Clinical Psychologist to investigate and report on the symptoms and experiences of those with Pernicious Anaemia. Contributions to our newly set-up Research Fund will go towards funding the development of this Diagnostic Tool.
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