I have been sent a letter from the Pernicious Anaemia Society regarding the opportunity to contribute to research about PA.
Unfortunately, I am not eligible as I don't have a Pernicious Anaemia diagnosis. This is likely also to be the case with others here on the forum.
It is important that a wide range of people are involved in the study for it to give a true account - so please, if you have had a PA diagnosis, get involved !
Hi Cherylclaire
I received the same and I was wondering the same!
I would have thought that if the B12D is not caused by diet, medication, surgery or nitrous oxide exposure then the likelihood is that it is AIG/PA.
The consultant I saw, said of his 2000+ patients, only two had ever tested positive for PA but all had PA!
mmm .... I wonder if the wording of the email is correct.
I will call the gentleman concerned at Surrey University and update you on the outcome.
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Well, thanks for that !
There are potentially some really useful contributors getting missed here, I think.
I have sent Alfie, the PhD researcher an email. It’s been delivered but not read yet.
I will update when I get a reply.
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Absolutely- we are the font of information and potential beneficiaries!
Looking at the flowchart for B12 deficiency and when you cross off each one because you don’t have it/haven’t done that thing/etc, the only one that is really left is PA!
Same here, no PA diagnosis but I would have loved to have contributed to research!
How did you receive the invitation.If I can interest my husband he has a diagnosis.
kkatz and GoneWithTheWind1972 :
I got an e-mail from the Pernicious Anaemia Society; you need to be a member to be a participant. Sometimes, the research group is confined to the UK - probably because a diagnosis might be arrived at by different methods or values elsewhere. Worth checking with the PAS.
I have a confirmed PA diagnosis, confirmed with a biopsy also. Can people from around the world contribute or is it UK exclusively?
PAS is working in collaboration with a PhD student from the University of Surrey to conduct research that is aiming to improve the management and understanding of pernicious anaemia/anemia. He has asked PAS to post this in reply to this particular post:
"Initially, this survey was limited to those with a confirmed diagnosis of pernicious anaemia to strengthen the data, especially for a research publication. However, we understand that many people face challenges in getting a definite diagnosis due to poor diagnostics, and there are ongoing issues around what should count as a "confirmed" diagnosis of PA. This can mean that many people who likely have PA cannot receive a formal diagnosis due to these limitations.
To make this research as inclusive as possible, the University of Surrey has now made the change to the survey wording to include all PAS members whether you have a confirmed, probable, or suspected diagnosis of PA. This approach lets us gather a wider range of experiences within the PA community.
In the survey, there is a question asking whether you have a confirmed diagnosis, and you can answer according to your circumstances. We encourage all PAS members to take part, as every response will help us gain a better picture of PA and its impact."
PAS encourages everyone who has or thinks they have PA to take part. You do need to be a member of PAS to take part in the survey. You are welcome to sign up to take part in this particular survey and future surveys. This is because membership fees fund our important research work. We are the only charity worldwide funding such research into Pernicious Anaemia.
pernicious-anaemia-society....
This is wonderful news !
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Information about Pernicious Anaemia and B12 deficiency from the Pernicious Anaemia Society
