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The Pernicious Anaemia Society

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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.

12/11/2025

Carrie-Anne is fundraising for Pernicious Anaemia Society, and she would really appreciate your support. Read her story on her JustGiving page as to why she wants to meet her target.

Carrie has worked hard at raising funds for our small charity as it is very close to her heart after being diagnosed with PA in her 20's.

Carrie's efforts have been amazing so far and it would be great if you could help push her over the final target line. She is involved in the wider B12 deficiency community being a supporter of PAS and B12Deficiency charities.

Donating through JustGiving is simple, fast and totally secure. Once you donate, they'll send your money directly to her fund within the Pernicious Anaemia Society, so it's the most efficient way to give — saving time and cutting costs for the charity. Carrie ultimately has a say in what the fund is spent on so you can be sure you are supporting her passion directly.

https://www.justgiving.com/page/carrie-carr-2?utm_medium=FR&utm_source=EM

11/11/2025

💚 Supporting a Loved One with Pernicious Anaemia (PA) 💚

Caring for someone with PA can be challenging, but your understanding and compassion make a huge difference. Here’s how you can help:

🧠 Understand the Condition
PA is an autoimmune disorder that stops the body from absorbing vitamin B12, causing fatigue, brain fog, mood changes, and neurological symptoms. Treatment involves regular B12 injections, but recovery can take time.

💬 Communicate Openly
Encourage honest conversations about symptoms and experiences. Being a patient and empathetic listener can provide real emotional support.

🧾 Educate Yourself
Learn about PA and its challenges. This helps you offer informed support and advocate effectively for your loved one.

🏥 Assist with Medical Needs
Help keep track of appointments and treatment schedules. If your loved one is comfortable, accompany them to appointments for moral support.

🤝 Connect with Support Networks
The Pernicious Anaemia Society offers resources and support for families. Joining support groups can provide guidance and community.

🧘‍♀️ Be Patient and Flexible
Recovery can be unpredictable, with good days and bad days. Patience and flexibility are key.

Your support plays a vital role in their health and well-being. 💚

➡️ Find out more and access resources: http://pernicious-anaemia-society.org/

11/11/2025

Join us on 19 November for a special online seminar with Julie Wichlin, PAS trustee and founder of the U.S. support group. After decades of unexplained symptoms and misdiagnoses, Julie was finally diagnosed with Pernicious Anemia in 2021.

In this session, she’ll share:

• What it’s like to live under a cloud of mystery symptoms for years
• Observations on how PA is diagnosed and treated in the U.S. — and how it compares with experiences in the UK and elsewhere
• The common obstacles patients face: outdated tests, inconsistent access to injections, and a system that often dismisses multisystem symptoms
• How community support and advocacy turned frustration into action
• Why the patient voice matters — from personal journeys to global awareness

The seminar will be held online at 6:30 – 8:00pm GMT; please adjust time according to your time zone.

You can purchase a ticket to the webinar at https://shop.pernicious-anaemia-society.org/product/breaking-the-silence-building-community-living-with-pernicious-anemia-and-advocacy-in-the-u-s/

10/11/2025

🩸 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!

08/11/2025

🛒 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/

07/11/2025

🌟 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!

06/11/2025

💉 Expectations vs. Reality: Starting B12 Treatment
When you finally get a diagnosis of Pernicious Anaemia or B12 deficiency, starting treatment can bring both relief and a lot of questions. It’s natural to hope for instant results - but recovery doesn’t always happen overnight.

Here are a few common expectations vs. realities when it comes to B12 treatment:

✨ Expectation: You’ll feel better immediately after your first injection.
💭 Reality: Some people do notice a quick boost in energy or focus, but for most, recovery is gradual. It can take weeks or even months of consistent treatment to feel real, lasting improvement - and for some, it’s a longer journey still.

✨ Expectation: B12 injections will fix all your symptoms.
💭 Reality: Treatment addresses the deficiency, but not all damage can be reversed - especially neurological symptoms if the deficiency was severe or long-standing. Many people notice improvement, but some symptoms may persist.

✨ Expectation: Once you start injections, your B12 levels will be normal and stay that way.
💭 Reality: For people with PA or absorption issues, treatment is lifelong. Regular monitoring of symptoms (not serum B12 levels) is key to maintaining stability and preventing relapse.

✨ Expectation: Recovery is linear - you’ll just keep getting better.
💭 Reality: Recovery can feel like a rollercoaster. You might have ups and downs, “B12 slumps,” or setbacks when other health issues or stress come into play. You’re not alone in that - it’s a normal part of the process.

✨ Expectation: Everyone’s treatment plan looks the same.
💭 Reality: Every case of PA and B12 deficiency is unique. Treatment should be tailored to your needs - but because awareness and education are still lacking in many places, patients often need to self-advocate and stay informed.

We're here at the Pernicious Anaemia Society exist to help you do exactly that. 💚

📖 Learn more and find support: https://pernicious-anaemia-society.org/

04/11/2025

🧔 Movember: Raising Awareness for Men's Health 🧔

November isn't just about growing a moustache - it's about growing awareness.

Movember shines a spotlight on men's health issues, including prostate cancer, testicular cancer, and mental health. But there's another condition that often goes unnoticed: Pernicious Anaemia (PA).

🔍 Why It Matters:
PA is an autoimmune condition that affects how your body absorbs vitamin B12, leading to a range of symptoms such as fatigue, nerve damage, and cognitive issues. It's crucial to recognise that symptoms can persist even when blood serum levels appear normal.

💡 Key Takeaway:
Men, especially those over 50, should be vigilant about their health. If you're experiencing unexplained fatigue, memory issues, or mood changes, don't dismiss them as just part of aging. These could be signs of PA or other health concerns.

🩺 What You Can Do:

Get Screened: Regular check-ups can help detect underlying issues early.
Know the Symptoms: Familiarise yourself with the signs of PA and discuss them with your healthcare provider.

Advocate for Yourself: If you feel something isn't right, seek a second opinion or request specific tests.

This Movember, let's not only grow our moustaches but also our understanding of men's health. For more information on PA and how to manage it, visit our website: https://pernicious-anaemia-society.org/

03/11/2025

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!

03/11/2025

It’s ! The time of year when we celebrate the amazing contribution made by trustees for their charities and recognise the difference they make. You can find out about this week’s range of events and access free guidance and resources at http://www.trusteesweek.org/

Trustees’ Week is a time for us to come together to celebrate the achievements of nearly one million trustees across the UK. Thank you for the time, commitment, and effort you bring to your charities to help them thrive.

Who are the trustees of the Pernicious Anaemia Society? Find out here! https://pernicious-anaemia-society.org/aboutus/

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

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