Membership of Health Unlocked is not the same as membership of the charity which represents the interests of people with PA or suspected of having PA. You can join the Society at the link above. We are an international organisation and you don't have to have a formal diagnosis of PA in order to join.
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. 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.
Becoming a member will give you the following benefits:
Access to the full website
Research Programmes
Newsletter
Seminars & Webinars
Access to our tailored and individual Helpline Support by phone and email
Access to a Local Support Group
Access to our Advocacy Services
International Community of patients, research and information
But there is also another reason to join us. We are an established charity representing more than 8,000 patients who have Pernicious Anaemia or malabsorption of vitamin B12. 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.
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PAScomms
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I feel it important to add, when I was training to become a health professional, we were taught to signpost to organisations. So, that people would receive further knowledge, be educated and have emotional support of their individual conditions.
By becoming a member of the Pernicious Anaemia Society and mentioning it at appointments with clinicians, they may appreciate that you are an informed patient.
Please note that as a student, a person has time to explore the wonderful supporting charities. As a clinician who worked front line (this means in a hospital setting, it was the norm to manage, if lucky, on 1 hot drink in 13 -17 hours. Then be on-call for the night).
Pernicious Anaemia/vitamin B12 Deficiency is a chronic illness meaning it is a long term illness. Frontline staff can have whole shifts dealing solely with acute events. We triage, we prioritise and we work extremely quickly.
When running clinics, if someone had a condition and I only had basic knowledge, I would ask whether they had correct treatment and support. Note in the diary of organisations or conditions to further my own knowledge.
Today, my amazing personal tutor at my previous university will receive a copy of What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency book by Martyn Hooper MBE.
It is a donation to the university library. Whether a lecture on the subject will be taught is beyond me. It was not on our syllabus. However, information sharing is a huge area in health care.
I think you will be delighted to hear the following:
Back in January 2020, I had my final appointment with the Adult Inherited Metabolic Diseases team of consultants, who had been looking at my DNA for a cause for my continued raised MMA. Despite already having the usual B12 injections for B12 deficiency, this had remained raised since at least 2016, which had then given me a functional B12 diagnosis and raised injection regime from one B12 injection every three months to two injections a week (self injecting from late 2017). Still the problem remained. They had not been able to find any genetic reason ...but my MMA had finally, on the 6th test, suddenly dropped into mid-range.
They were very apologetic about being unable to find a cause, recognised how ill I was - and then suggested that I join the Pernicious Anaemia Society for support ! When I told them that I had already been a PAS member for quite a while, we discussed the early research trial findings and Martyn Hooper's work. Lovely people, committed to continuing to discover and learn more in order to help others.
Despite this appointment being viewed by me as reaching the end of the line, I left that final appointment feeling that I had been respected and listened to - and that they had joined me in my search for an answer.
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? Pernicious anaemia with normal B12 and no anaemia?
Is this Pernicious Anaemia?
Is the Pernicious Anaemia Society commenting on the proposed new NICE guidelines?
Private Blood Tests for Pernicious Anaemia
Pernicious Anaemia 
