The Pernicious Anaemia Society

28/07/2025

Come join the Chicago online support group meeting on 9 August at 1pm US Central time as we talk about finding trustworthy information and real-life support for living with Pernicious Anaemia. We’ll explore the Pernicious Anaemia Society website together and share our own tips, experiences, and resources. Let’s help each other feel more informed, connected, and understood.

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

PAS Support Group 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.

24/07/2025

More Than Just B12 Deficiency: The Hidden Chaos and Bizarre Symptoms of Pernicious Anaemia

Pernicious Anaemia is known as The Great Pretender - often mistaken for other conditions because of its wide and surprising range of symptoms.

From burning feet and brain fog to strange sensory changes and mood swings, it can feel like your body is sending confusing signals.

Some symptoms are so unusual they might make you question your sanity - but you’re not alone. Thousands living with PA share these experiences every day.

If you or someone you know struggles with unexplained symptoms that don’t add up, this blog is for you.

👉 Read the full post to learn about the strange, rare, and surprising symptoms of Pernicious Anaemia - and why early testing matters.

🔗 https://bit.ly/4keConh

22/07/2025

The Road to Recovery: Expectation vs Reality

Expectation: A smooth path, straight road, quick results.

Reality: More like an off-road adventure 🏞️ - some bumps, twists, detours… and maybe even a few setbacks.

Starting treatment is a huge step forward - and it’s easy to expect instant results.
You think you'll be feeling better in no time but the reality is that your body needs time to repair and heal.

⏳ Recovery can take weeks or even months, and for some, symptoms may never fully go away. That doesn’t mean you’re doing it wrong.

It means your body is working hard to repair, rebalance and recover.

❤️ Be kind to yourself. Rest. Nourish. Listen to your body.

You are not alone - and there’s strength in connecting with others who truly understand.

🖤 Save this post for the tough days. Share to support someone else on the journey. And if you haven’t yet, connect with the Pernicious Anaemia Society for trusted information and support.

19/07/2025

🛍️ Shop to Support! 🛍️

Have you visited the Pernicious Anaemia Society’s online shop yet? We offer a selection of products designed to raise awareness and support our cause. From branded items to educational materials, your purchase helps us continue our vital work. We plan to regularly update our stock, so take a look!

Shop now and make a difference!

👉 Shop Now - https://shop.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!

18/07/2025

🌟 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!

17/07/2025

💉 Struggling with B12 injection frequency? Here’s what you need to know
If you have Pernicious Anaemia (PA) or B12 deficiency due to autoimmune gastritis, NHS guidance is clear:

➡️ You should receive lifelong intramuscular B12 injections, even if your symptoms have improved or gone.

But what that actually looks like can vary - a lot.

Here's a breakdown of what the current UK guidelines say:

🧠 If you have neurological symptoms:
• 1mg injections every other day until you stop improving
• Then every 2 months for life

🩺 If you don’t have neurological symptoms:
• 1mg injections three times a week for 2 weeks
• Then every 2–3 months for life

👉 Important to know:
The UK switched to 3-month intervals in 1984 - but many countries still give injections every 1–2 months.

🚨 Why this matters:
• Symptoms can take weeks or months to improve, and some patients get worse before they get better¹
• For many, 3-month gaps between injections just aren’t enough
• We hear from countless members forced to seek extra injections elsewhere when they can't get the support they need

PAS is working with researchers to understand why some people need more frequent doses - and what can be done to improve care.

💊 What about oral B12?
Oral cobalamin can help some people, but it’s very rarely suitable for those with absorption issues. And for many, injections are the only option that works long-term.

❗ A quick tip:
Don’t take B12 supplements before any test for B12 levels or intrinsic factor antibodies - it could mess with your results.

✅ What can you do now?
• Keep a symptom diary to track patterns between injections
• Know your rights - and what the guidelines actually say
• Share this post to raise awareness or help someone in the same position

You're not imagining it. You're not alone. And you deserve proper treatment.

15/07/2025

What NHS England’s 2025/26 Plans Mean for people with Pernicious Anaemia

Here’s what you need to know:

🔹 Better access to GP services
The focus is on making it easier to get appointments. But patient experience - how it feels to get care - isn’t mentioned as much. We hope that improves too.

🔹 Cutting waste & costs
NHS wants to save money by stopping “low-value” treatments and reducing prescribing costs. For example, patients are being encouraged to buy Vitamin D supplements themselves instead of getting them on prescription. But this raises questions about safety and effectiveness.

🔹 Listening to patients
There’s a push to stop unnecessary blood tests for PA patients who are already on B12 injections. Plus, training patients to self-inject B12 could save time and money - and give people more control over their care.

🔹 Updating rules on B12 injections
Current laws limit how patients can get and give themselves B12 injections. Changing these could improve care and reduce costs.

🔹 Tackling health inequalities and prevention
NHS is working to reduce health gaps and focus on preventing major diseases like heart disease and diabetes. But B12 deficiency and autoimmune diseases also need more attention.

🔹 Moving towards digital care
More services are going online — like electronic prescriptions and virtual consultations. This makes things easier but there’s still room for improvement.

What does this mean for you?
We want to see better access and better patient experience. We need changes to make self-injection easier and more affordable. And we want the NHS to listen to those living with PA and B12 deficiency to improve care for everyone.

— Katrina Burchell, CEO of Pernicious Anaemia Society

11/07/2025

🩸 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.

👉 Read this interesting article from the Times of India to learn more:

Vitamin B12 Deficiency can be life threatening: Here's what to do | - Times of India ( https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/vitamin-b12-deficiency-can-be-life-threatening-heres-what-to-do/articleshow/111685451.cms )

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

10/07/2025

🎉 PA Day Countdown: 3 Months to Go! 🎉

Saturday 11th October is getting closer… and we want to know:

💬 How are YOU planning to mark Pernicious Anaemia Awareness Day this year?

Whether you’re…
🟥 Sharing your story on social media
🟥 Organising a coffee morning or local meet-up
🟥 Wearing red and spreading the word at work
🟥 Chatting to your MP or GP about your experience
🟥 Creating a display at your local library or community centre
🟥 Or simply lighting a candle and giving yourself a moment of reflection…

✨ Every action - big or small - helps shine a light on PA.

It’s a chance to educate, raise awareness, and connect with others who truly understand what it means to live with this invisible condition.

💡 Not sure where to start? Don’t worry - over the next few months, we’ll be sharing ideas, resources and ways to get involved so you can make the day your own, in a way that feels meaningful to you.

📅 Save the date: 11.10.2025
📍 Tell a friend. Make a plan. And together, let’s make this year’s PA Day louder than ever.

❤️ Let us know your ideas - or tag us if you’re already planning something!

09/07/2025

09/07/2025

🌟 Make a Difference! 🌟

Your donations power our society's vital operations, fuel research projects, drive awareness campaigns, and so much more. 🤝

🔬 In collaboration with the University of Surrey School of Medicines and Biosciences, we're proudly supporting a four-year PhD student dedicated to advancing our understanding of PA. This critical research delves into diagnosis, treatment, symptoms, familial clustering, and links with other autoimmune diseases.

💙 Support this groundbreaking work by making a donation specifically for our PhD research. Visit our website's donation page, choose "PhD Research" as your cause, and your contribution will be earmarked for this crucial activity, directly impacting the lives of those with Pernicious anaemia.

With your donations, we can persist in aiding those in need and pushing for advancements in diagnosis and treatment. It's simple to donate — choose your preferred platform:
- PayPal Giving
- JustGiving
- Easyfundraising
-Standing order from your bank direct to our account

🌈 Every contribution counts, and together, we can make a impact on the journey toward improved lives for PA patients.

🙏 Why not redirect your money toward positive change? Your support makes a world of difference!

Head to our website to donate: https://pernicious-anaemia-society.org/donate/

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