Pernicious Anaemia Society

We are changing the way Pernicious Anaemia is diagnosed and treated by:

providing information to patients and health professionalsproviding help and support to patients and their familiesengaging in research with the health research communitylobbying decision makersworking hard to change the way in which PA is diagnosedworking hard to change the way PA is treated

Pernicious Anaemia

What is Pernicious Anaemia and what does it do?

The Chair's Blog

Read about Martyn Hooper’s experiences as chair of the Society

Healthcare Professionals

Information to help you and your patients

Research follow-up: Last Samples Delivered

Last Friday we delivered the 45 frozen Urine Samples to the laboratory in Milton Keynes as part of the research programme that is investigating why some patients need more frequent injections than others. The urine samples, which were transported in dry ice, are from...

Exploring symptom perception in Pernicious Anaemia : Research participants needed

An opportunity for you to participate in an online study that focuses on exploring the symptoms of Pernicious Anaemia. Aim of the study To establish how (and if) physical and psychological symptoms of the condition change over the 12-week treatment period....

More good news! Another step forward in B12 research

We recently reported that the molecular analysis of the stool samples taken from those patients who need more frequent injections differed from those who manage perfectly well on one injection every three months. We also stated that the bacteria analysis was due any...

Our Mission

To secure a full and comprehensive review of the way in which Pernicious Anaemia is diagnosed and treated that will lead to more timely diagnoses and better treatment

Get Involved

Support the PAS

Give yourself the gift of giving and make a difference for everyone with Pernicious Anaemia.

Member Support Groups

Do come along and join us, and other other members of the society for a chance to share your experience of living with Pernicious Anaemia in a supportive and friendly environment.

No group in your area? Start your own!

PAS Just Giving

Fundraise for us

Raise much needed funds for the society by holding an event or get yourself sponsored.

Send e-cards

Send e-cards and donate

Help our charity in lieu of cards! Send festive e-cards and donate the equivalent to the society.

PAS Volunteer

Volunteer

Help out! Let us know what you can or want to do to help us

Find Out More

Did you know ?

%

Of patients waited 5 years or more for diagnosis

%

Of patients were initially misdiagnosed

%

Of patients are unhappy with their treatment

Become a Member of the Pernicious Anaemia Society

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. 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. Join us and help us bring about this much needed review.

Our Member Benefits

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.

Access to detailed information about Pernicious Anaemia
Access to our Helpline
Access to a Local Support Group
Attend our bi-annual conference at a reduced fee

Receive our quarterly newsletter
Opportunity to participate in research programmes
Letter Writing Service
Access to our Advocacy Services

“I have found the PAS invaluable for providing information and support since diagnosis 4 years ago. Because of the PAS I have been able to take control of my condition which has relieved a lot of anxiety and given me the confidence me to treat myself when necessary. This enables me to continue with employment and normal life without the overwhelming fatigue which I previously experienced. I am sincerely grateful to all at the PAS!”

Maggie Cockburn

“My GP had stopped my B12 injections and after an appointment would not agree to restarting them. The support and advise from making contact with the society was invaluable. It was still a fight and letters sent to the practice from myself and the society were not responded to. However, on collecting a repeat prescription for other medication it also contained an ampoule of B12. As I am a nurse I am able to injected myself and so far the prescriptions have continued. So I can only presume that the GP had “given in”! So thanks to everyone, without your help I dread to think what state I would be in.”

Pam Brown

“In 2012-13 the PAS saved my life. After one year off work and a heart operation I was getting worse. In desperation a google search of my symptoms took me to the PAS to discover my symptoms were not a mystery. After self treatment and a further 7 months of recovery I restarted work. I am classed as a success story but have permanent damage which could have been easily avoided. I will always be thankful for the help.”

Mike Lynch

“In November 2014 and June 2016 the Pernicious Anaemia helped me to get my B12 injections reinstated, by providing advise and letters to give to my GP. After providing a letter in early December 2014 my GP reinstated my injections but then withdrew them again. The Pernicious Anaemia Society kindly provided a second letter which resulted in the injections being reinstated. I am very grateful to the Pernicious Anaemia Society for their support and I believe that without their support my injections would have been withdrawn.”

Sandra Denise Green

“It gave me my life back through information, education and links to others with long term experience. It continues to fight for GP recognition for this dreadfully under treated condition. It guided me safely through to self medicating. It without doubt has been a live saver for many.”

Susan Thorne

“Given me the confidence that comes from having expert, informed and impartial information. Knowing that the society is advocating for people with PA in all the important forums. Someone keeping an eye out for new developments in research and treatment.”

Jackie Carpenter

“From the knowledge gained from the society I was able to approach my GP to request more frequent injections, initially on a trial basis.
2. My GP admits she knows very little about the subject and I was able to direct her to the medical presentations of the researchers posted on the site which she found very useful. I am lucky in that she is willing to experiment and learn about pernicious anaemia.
3. I was able to approach a doctor at HO to find out if a physio could prescribe medication to me with my complaint.”

Ruth Brown

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