Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Pernicious Anaemia Society Support Groups

by | Oct 13, 2018 | 3 comments

Over the summer I have been fortunate to be asked to make a presentation to four newly formed Support Groups. This has seen me travel to Glasgow, Belfast, Southampton and Wolverhampton. As well as these new support groups I have also been asked to make presentations at several existing groups including my own local south Wales group. Although the travelling can be exhausting at times I have met some truly inspiring people who have been struggling for many years with their condition. I try not to hog the limelight so to speak and encourage those who attend the meetings to talk to each other as this is the only way patients come to realise that they are not alone in their fight to cope with the disease. One thing that stands out is the wide range in ages of attendees; from fifteen-year olds to 80-year olds – this disease can and does affect all ages. All who attend these meetings say the same thing – ‘it’s nice to talk to others who know what it’s like living with PA’. The organisers of these events deserve a special mention as it takes quite a bit of organising to get the first meeting up and running. The society can help by emailing an invitation to all members within a certain geographical area and promoting the event on our website and social media, but it takes someone special to find a suitable venue and organise refreshments etc. If there isn’t a Support Group in your area you may want to think about starting one up. You can find out here where we have a group already. Thankfully we do have a volunteer who oversees these groups and who can help with practical advice – for further details contact Lynn.

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  1. BerYl41

    I was a member of the Pernicious anaemia society however I have had no information in the last year. Could you please check my contact details. I do have PA and often find myself struggling . Thank you Beryl Laing

  2. Kristen Jackson

    I have suffered tremendously for 14 years with many classic symptoms of gastroparesis. The malady has stolen my life and wreaked havoc on everyone I. Love. This illness has gone undiagnosed despite repeated test… in: :LOTS OF TESTS. Despite being told that proton pump inhibitors make me worse, I was ignored and prescribed another PPI. So, years have passed and a woman in my yoga class asks about the bruises on my arms. Not knowing if it is Devine intervention or insanity, I think to myself: “I need vitamin B12!! I get some sublingual B12 drops and the very next day my pounding, desperate heart is more relaxed. There are no words to convey the extreme horror I felt about our sorry-ass health care in the USA. We have a bunch of overworked insane health care workers trying to treat overworked, insane patients.


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