The Pernicious Anaemia Society

The Pernicious Anaemia Society We are a registered charity that exists to provide information, help and support to sufferers of Pernicious Anaemia (PA), including their families and friends.

We also strive to improve current and future diagnosis and treatment of Pernicious Anaemia.

🩸 What is Pernicious Anaemia?Pernicious Anaemia (PA) is an autoimmune disease that prevents the body from absorbing vita...
30/03/2026

🩸 What is Pernicious Anaemia?

Pernicious Anaemia (PA) is an autoimmune disease that prevents the body from absorbing vitamin B12—a vital nutrient needed for healthy red blood cells, nerve function, and brain health.

For over a century, doctors and scientists struggled to understand why patients were dying from what was once a fatal condition. It wasn’t until the 1920s that replacement B12 therapy was discovered, eventually leading to the availability of effective treatment.

🔬 How does PA affect the body?

✅ The stomach normally produces Intrinsic Factor, a protein essential for absorbing vitamin B12.
❌ In PA, the immune system attacks Intrinsic Factor and the stomach lining, making B12 absorption impossible.
⚠️ Without enough B12, red blood cells become misshapen and enlarged, leading to severe fatigue, brain fog, nerve damage, and long-term complications.
🚨 Why is early diagnosis crucial?
🔹 Many cases of PA go undiagnosed or misdiagnosed because symptoms mimic other conditions.
🔹 Some doctors only check B12 levels if anaemia is present, but PA can cause neurological symptoms long before anaemia develops.
🔹 Testing limitations mean that even those with PA might not test positive for the standard Intrinsic Factor Antibody test.

💉 The Lifesaving Treatment
PA can’t be cured, but it can be managed with lifelong B12 replacement therapy (usually injections). However, many patients still struggle to get the right diagnosis and proper treatment.

💡 Want to learn more?
Our webinars cover everything from symptoms to diagnosis and ongoing care—perfect for patients, carers, and professionals.

Explore our webinar recordings and resources in the PAS shop: https://shop.pernicious-anaemia-society.org/

Support our charity by becoming a member or donating, and follow our page for more insights and useful information about PA!

🛒 When you shop with PAS, you’re doing more than just making a purchase - you’re supporting resources that make a real d...
28/03/2026

🛒 When you shop with PAS, you’re doing more than just making a purchase - you’re supporting resources that make a real difference.

Our webinars help you better understand Pernicious Anaemia (PA) by providing expert-led guidance for anyone affected — whether you’re newly diagnosed, a family member, or a healthcare professional. They offer:

✔ In-depth knowledge about PA symptoms, diagnosis, and treatment
✔ Practical advice on managing day-to-day life with PA
✔ The latest updates on research and medical advances
✔ A chance to connect with others who understand the journey
By joining or purchasing access to these webinars, you’re not only gaining valuable insights but also directly supporting PAS’s vital work. Every contribution helps us:
✔ Keep our helpline running to provide personalised support
✔ Fund research into lesser-known symptoms like iron deficiency
✔ Organise more support groups and educational events across the UK and beyond
✔ Advocate for better diagnosis and treatment through national policy change

Plus, you can support us in other ways - by exploring our shop’s range of awareness items and eco-friendly eCards, all designed to help raise funds and spread knowledge.

🎁 So whether you’re learning, gifting, or both, you’re making a real difference for the PA community.

🛍️ Explore our webinars and shop: https://shop.pernicious-anaemia-society.org/

🌟 Your Membership with the Pernicious Anaemia Society! 🌟Annual Membership - £20/year: Unlock a world of ongoing benefits...
27/03/2026

🌟 Your Membership with the Pernicious Anaemia Society! 🌟

Annual Membership - £20/year: Unlock a world of ongoing benefits! After your first year, we make it seamless—your membership renews automatically for just £10 annually. The hassle-free way to stay connected and supported. Cancel anytime in your membership account.

Lifetime Membership - £125: Experience the gold membership journey! Become a cherished Lifetime Member and Supporter of the Society. Your generosity comes with perks—receive an exclusive Welcome Pack, complete with a copy of the former Chairman’s book and unique PAS merchandise. It's a lifetime of connection, support, and gratitude.

✨ Why Join?
🌍 International Representation: We are the sole international charity advocating for Pernicious Anaemia patients.

🧪 Research Advocacy: Your support helps commission and fund crucial research.

🤝 Informed Community: Benefit from a community of knowledgeable members actively contributing to research.

🏥 Healthcare Collaboration: We value healthcare providers and strive to collaborate for enhanced patient quality of life, focusing on improved diagnosis and treatment.

🔗 Join us now, Your support makes a significant impact: https://pernicious-anaemia-society.org/member/

Support our charity by becoming a member or donating, and follow our page for more insights and useful information about PA!








PAS Resources: Supporting Patients Beyond DiagnosisA diagnosis of Pernicious Anaemia is not the end of the journey. For ...
26/03/2026

PAS Resources: Supporting Patients Beyond Diagnosis

A diagnosis of Pernicious Anaemia is not the end of the journey. For many, it’s just the beginning.

Living well with PA requires clear information, ongoing learning, and the confidence to ask the right questions.

The Pernicious Anaemia Society provides trusted, evidence-based resources including:
📘 Clear explanations of PA and B12 deficiency
🧪 Guidance on diagnosis, testing and treatment
📄 Practical helpsheets and patient education materials
🔬 Research updates and expert articles
🤝 Support group information and real patient stories

Our resources are here for newly diagnosed patients, long-term members, carers, researchers and healthcare professionals alike.

Because education empowers better conversations.
Better conversations lead to safer care.
And safer care leads to better outcomes.

If you value independent, patient-led education and want to help us continue producing trusted resources, consider becoming a PAS member. Your support helps us expand research, education and advocacy work for the whole community.

🔗 Explore our resources and learn more:
https://pernicious-anaemia-society.org/

24/03/2026

At our 10th Anniversary Conference, Professor John Hunter reminded us that vitamin B12 deficiency has different causes – and different patients need different approaches.

Listening matters.
Understanding the cause matters.
Individualised care matters.

Because no two people with B12 deficiency are the same.

The Pernicious Anaemia Society: 20 years of Patient support, education and research

Do you have a child aged under 18 years of age that you suspect or know has Vitamin B12 deficiency or Pernicious Anaemia...
24/03/2026

Do you have a child aged under 18 years of age that you suspect or know has Vitamin B12 deficiency or Pernicious Anaemia? If so, please complete this short survey led by a team at De Montfort University looking at experiences of parents as they seek (or have sought) a diagnosis and treatment for a child with suspected Vitamin B12 deficiency. You can complete the survey via this link: https://forms.office.com/pages/responsepage.aspx?id=48B4T1DS3027HBXTFFaXzPbds7cabuNBjRZ7wDSgNfJUREkzQzQzMDk5RzBSNVpMSDNYMjJOQ1oxOC4u&route=shorturl

We are also looking for some people who would be willing to participate in a short online interview to discuss your experiences in more detail. If you would like to learn more about this opportunity please email Nicola Ward at n.ward@dmu.ac.uk

There are several common misconceptions about Pernicious Anaemia (PA) so it is important to be aware of the facts.1️⃣ Pe...
23/03/2026

There are several common misconceptions about Pernicious Anaemia (PA) so it is important to be aware of the facts.

1️⃣ Pernicious Anaemia only affects older people. This is not true. People of all ages, and this includes young children, have been diagnosed with PA.

2️⃣ You can get enough B12 from your diet. PA is an auto-immune disease. If you have PA, no matter what you eat, you cannot absorb sufficient B12 from your food. You will require lifelong vitamin B12 therapy usually through regular injections.

3️⃣ Pernicious Anaemia is not a serious condition. PA is a serious condition and, without the correct treatment it is debilitating and can be life-threatening. If you have been B12 deficient for a long time recovery may also take some time., Neurological symptoms resulting from B12 deficiency may take several months or even years to resolve completely

4️⃣ Once you've had your injection you will be fine. This 'one size fits all' regime is not true. Whilst some people manage perfectly well on 3 monthly injections, others find their symptoms returning long before their next injection is due. The clinical picture is the most important factor in assessing the frequency of treatment and serum blood tests and further testing of B12 levels are not required once Vitamin B12 treatment has commenced.

Support our charity by becoming a member or donating, and follow our page for more insights and useful information about PA!








If you have PA and would like support or to chat with others who have this illness, please join the Scotland support gro...
20/03/2026

If you have PA and would like support or to chat with others who have this illness, please join the Scotland support group online TODAY, 20 March at 7:00pm.

This meeting will feature an informal presentation for the newly diagnosed.

https://pernicious-anaemia-society.org/event/scotland-online-support-group-meeting/

These meetings are an excellent way to meet other members of the society, share experiences, learn of how PA has impacted on their lives and how they have developed coping strategies to deal with the ongoing symptoms in a welcoming and friendly environment.

Whilst Karen is based in Scotland, you don’t have to live in that area to attend. It doesn’t matter where you live as this is a Zoom meeting and all members are welcome to attend.

Hope you can make it!

🩸 Vitamin B12 deficiency isn't just about diet! 🩸 While many associate B12 deficiency with poor nutrition, a significant...
20/03/2026

🩸 Vitamin B12 deficiency isn't just about diet! 🩸 While many associate B12 deficiency with poor nutrition, a significant number of cases are due to non-dietary causes, such as Pernicious Anaemia. This can lead to life-threatening complications if not diagnosed and treated early. Understanding the root cause is crucial.

Join the Pernicious Anaemia Society to support vital research, raise awareness, and ensure that everyone has access to the right information and care.

👉 Head to our website to learn more: https://pernicious-anaemia-society.org/

Support our charity by becoming a member or donating regularly. Follow our page for more insights and useful information about PA!







The Hidden Cost of “Reassurance”“Everything looks fine.”For many people with Pernicious Anaemia, those words come long b...
19/03/2026

The Hidden Cost of “Reassurance”

“Everything looks fine.”

For many people with Pernicious Anaemia, those words come long before answers do.

Symptoms continue.
Appointments repeat.
Blood tests are re-run.
Referrals move from one specialty to another.

Reassurance can feel comforting in the moment. But when symptoms persist without explanation, it can also delay diagnosis and prolong suffering.

On the PAS website, we document how false reassurance can mean:
🔎 Missed underlying causes
⏳ Delayed diagnosis
🧠 Increased risk of long-term neurological complications

This isn’t about blame.

It’s about recognising a system that often prioritises ruling conditions out, rather than stepping back and asking:

“What explains all of this together?”
When reassurance replaces curiosity, patients can be left carrying unanswered questions alone.
PAS exists to change that pattern – through education, research, and amplifying the patient voice.

📚 Learn more about diagnosis, testing, and patient experience at
🔗 http://pernicious-anaemia-society.org/

If you have PA and would like support or to chat with others who have this illness, please join the Scotland support gro...
19/03/2026

If you have PA and would like support or to chat with others who have this illness, please join the Scotland support group online TOMORROW, 20 March at 7:00pm.

This meeting will feature an informal presentation for the newly diagnosed.

https://pernicious-anaemia-society.org/event/scotland-online-support-group-meeting/

These meetings are an excellent way to meet other members of the society, share experiences, learn of how PA has impacted on their lives and how they have developed coping strategies to deal with the ongoing symptoms in a welcoming and friendly environment.

Whilst Karen is based in Scotland, you don’t have to live in that area to attend. It doesn’t matter where you live as this is a Zoom meeting and all members are welcome to attend.

Hope you can make it!

At the Pernicious Anaemia Society, everything we do comes back to one core mission:💛 To improve the lives of people livi...
18/03/2026

At the Pernicious Anaemia Society, everything we do comes back to one core mission:

💛 To improve the lives of people living with Pernicious Anaemia through support, education, research, and advocacy.

We know that PA is so often misunderstood. Many of our members spent years searching for answers, being misdiagnosed, or told they were “fine” when they knew they weren’t.

That’s why this community matters so much.

We’re here to change that story - for everyone.

Through our work, we aim to:
- Raise awareness of PA and the seriousness of B12 deficiency
- Support patients and families navigating symptoms, diagnosis, and treatment
- Challenge outdated thinking in clinical settings and push for better training
- Fund research into the symptoms and impacts that are often overlooked
- Create community so no one feels invisible or alone in their experience

Whether it’s a friendly voice on our helpline, an online support group where people finally feel understood, or a personal story that gives someone hope - PAS exists to connect, empower, and uplift.

We are patients, volunteers, researchers, clinicians, and advocates. And together, we’re building something powerful: a future where everyone with PA is diagnosed sooner, treated properly, and supported fully.

Thank you for being here, for sharing your stories, and for supporting our mission - we couldn’t do it without you.

🌐 Learn more about our work and how to get involved:
https://pernicious-anaemia-society.org/aboutus/

Address

Ipswich
IP11QJ

Opening Hours

Tuesday 8am - 12pm
Wednesday 8am - 12pm
Thursday 8am - 12pm
Saturday 8am - 12pm

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