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Pernicious Anaemia Society

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Anyone interested in the history of the isolation of Vitamin B12 and its development as a 'medicine' for treatment of PA?

Deuto profile image
15 Replies

This is a bit of a test as it is actually my first post here.

I am a New Zealander who was diagnosed with PA (IF Positive) in Jan 2016. I have found little information in one place about the diagnosis and treatment of PA and other forms of B12 deficiency in NZ, including the medical protocols and guidelines used, availability of B12 for injections etc. Instead, there appears to be a lack of knowledge on the part of some medics here plus a lot of misinformation - eg that B12 for injection is available by prescription only, when in fact it is classified for general sales and available over the counter.

So, now that I am feeling like part of the human race again, I am determined to put together information about the B12 situation here in NZ for fellow Kiwis. More on this in another post sometime soon.

Anyway, as part of the research I have been doing, I have looked back at the history of the identification etc of Vitamin B12 as an anti-pernicious anaemia factor back in the 1940s by Dr Karl August Folkers and others at the Merck Laboratories in the US, and by others at the Glaxo Laboratories in the UK.

I found that Wikipedia was a bit short on details but then found this wonderful article which I thought I would put up here for anyone else interested. Not everyone's hottest subject, but there may be one or two other tragics!

jn.nutrition.org/content/13...

[Actually there are a few books on Dr Folkers etc that go into more detail, but I am not quite THAT interested.]

PS - I would be really pleased if any other NZers on this forum got in touch with me through this forum - preferably by the private Direct Message facility. Just go to your profile on the top bar; click and then select Messages. You are then able to 'email' me as Deuto.

I know there are a few other NZers here who post and comment, but I also suspect there are some who joined up but have never posted or commented.

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15 Replies
deniseinmilden profile image
deniseinmilden

Hi!

Thank you very much for that - I am a UK based willing "tragic" :-D and found it really interesting.

Are you aware that there's a Facebook group run by a lady in Canada with quite a few NZ members?

Deuto profile image
Deuto in reply to deniseinmilden

Hi to you also. I also found it really interesting from a PA and biochemistry perspective, but I also found it very appealing re the strong friendship that obviously developed between the writer and Dr Folkers. A little gem out there in the internet ether!

Now this Facebook page you mention - do you know what it is called?

Kapitigirl, another NZer, who has recently posted twice here has started up a NZ Facebook support group for NZers with PA.

I have even joined Facebook for this just yesterday, after resisting joining for years.

I will take part but will concentrate my efforts on bringing the information material together for people. Kapitigirl is much younger than me and probably much more into social media than me. A tag team perhaps?

deniseinmilden profile image
deniseinmilden in reply to Deuto

Hi,

Yes it's

Pernicious Anaemia / B12 Deficiency support group

For some reason the links to it that I have posted on here seem to get broken or somehow blocked.

If you can't find it come back here and either I or someone else might be able to help you.

I too joined Facebook just to join it and have got all sorts of benefits from it.

Deuto profile image
Deuto in reply to deniseinmilden

Thanks. I think I found it. This one, if the link works?

Second try - first did not work

facebook.com/groups/PAB12DS...

deniseinmilden profile image
deniseinmilden in reply to Deuto

Yes, perfect!

Thank you!

Deuto profile image
Deuto in reply to deniseinmilden

Found another one which seems to be US based but with people all over the world. From a quick look, a lot of double-ups with the PAS FB, and the one above.

facebook.com/groups/1565748...

I could really get lost down lots of rabbit holes on Facebook - exactly why I have resisted joining until now!

clivealive profile image
clivealiveForum Support

Thanks Deuto very interesting!

Even as recently as 45 years ago in 1972 when my then doctor gave me my P.A. diagnosis after two "Schilling" tests (the first in 1968) she told me I only had two years to live - unless - I ate raw liver three times a week - or had cyanocobamalin 1000mcg B12 injections every four weeks for the rest of my life,

I chose to have the injections and I'm still "clivealive" at 75 :)

deniseinmilden profile image
deniseinmilden in reply to clivealive

And a huge help and inspiration to us all too!

Deuto profile image
Deuto in reply to clivealive

Pleased you like it Clivealive. I actually call you Mr Folate! No offense meant.

I actually like liver but not raw, so we can all thank Dr Folkers and his biochemistry colleagues who saved us all from that!

I had a bet with myself as to who would answer or like the article.

So far I am right - even down to fbirder being first to like it. I thought it would appeal to fbirder.

clivealive profile image
clivealiveForum Support in reply to Deuto

Perhaps being a "tragic" is better than being called a "deficit" :)

Leothelion profile image
Leothelion

Hi very interesting, I'm also on n fb group, I've looked in the files and there are a few Nzers on there, herecis the link to join if your interested.

facebook.com/groups/PAB12DS...

Deuto profile image
Deuto in reply to Leothelion

Thanks so much. It looks an interesting group. Personally I really like this forum, but great to be able to try and round up the Kiwis!

Bit like herding cats, I suspect.

Love your name - as an August girl!

Leothelion profile image
Leothelion in reply to Deuto

Look forward to seeing on there, I'm a July girl,

Julie G.

KarC1 profile image
KarC1

Hi from Bridgend, South Wales, UK!! The Pernicious Anaemia Society which was formed by Martyn Hooper, is actually based in my home county - Bridgend. Martyn is now world renowned for his work on PA and all of it carried out voluntarily. Martyn has written three excellent books which are available on Amazon. If you didn't know much about PA before, you certainly would after reading these books. You can join the PA Society and keep up to date with all the latest goings on. There is also a Facebook page which is well worth joining. Good luck, Karyl

Deuto profile image
Deuto in reply to KarC1

Thanks so much Karyl. While this is my first post, I have been a member here for a few months and have replied to a few other posts.

Martyn has been an inspiration to me and although I have not yet joined the PAS, that is high up on my Must Do list. So pleased about his MBE, well deserved. I have spent a lot of time on the PAS website in the last year and have now joined the FaceBook group - and found two NZers on the very first post/thread I read. I have also had some DM chats with one of the Admins here who has/is providing a lot of good suggestions on 'my project'.

I have been to Bridgend several times but not since the 1970s when I lived in London for almost seven years. I loved Wales - and the strong, independent Welsh people!

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