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The Pernicious Anaemia Society

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The Pernicious Anaemia Society

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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.

19/10/2026

🔴 Understanding Pernicious Anaemia Symptoms 🔴

When it comes to Pernicious Anaemia, recognising the symptoms is crucial. Here's what you need to know:

1. Neurological Focus: PA primarily exhibits neurological and anaemia symptoms. Surprisingly, neurological signs often precede anaemia, so don't dismiss the condition if anaemia isn't immediately evident.

2. Gradual Onset: Symptoms typically develop gradually over the years, leading to potential misinterpretation as signs of ageing or a hectic lifestyle.

3. Varied Severity: Symptoms vary widely in intensity from person to person, with some experiencing numerous indicators while others may have only a few.

4. Overlap with Other Conditions: Many symptoms overlap with those of other illnesses, contributing to delayed diagnosis—a significant challenge for patients.

Consider the following symptoms:
- Numbness, pins and needles, or a burning sensation in the extremities.
- Muscle fatigue, cramping, or restless leg syndrome.
- Unexplained hair loss.
- Persistent headaches.
- Feelings of dizziness or lightheadedness.
- Changes in mood, including irrational anger, behavioural shifts, or signs of depression.
- Gum bleeding or mouth ulcers.
- Unexplained fatigue or exhaustion.
- Intermittent diarrhoea.

Remember, this list isn't exhaustive. If you're experiencing any of these symptoms, it's essential to explore further. Reach out to us to learn more about Pernicious Anaemia and its diverse array of symptoms. Don't hesitate to seek support and information—we are here to support you and your health care professional.

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

19/10/2026

Can’t keep your legs still at night? 🦵🩸

Restless legs can be more than just an annoyance at bedtime. Low iron may be part of the picture, so persistent symptoms are worth discussing with your GP.

17/10/2026

🦋 Thyroid health matters more than you might think!

Did you know that thyroid disorders can occur alongside other autoimmune conditions, including pernicious anaemia?

Understanding the symptoms, getting an accurate diagnosis, and knowing your treatment options can make a real difference.

📢 Join the Pernicious Anaemia Society for an informative webinar!

🦋 Thyroid Disease: Diagnosis, Treatment and Impact

🎙️ Featuring two knowledgeable advocates:

💙 Lyn Mynott – CEO of Thyroid UK

💙 Liz Smart – Chair of Trustees, Pernicious Anaemia Society

📅 Wednesday, 28 October 2026
🕡 6:30–7:30 PM UK time (GMT)
💻 Online webinar

🎟️ Tickets:
• PAS members: £5
• Non-members: £15

Whether you’re living with thyroid disease, supporting someone who is, or simply want to understand more about thyroid health and autoimmune conditions, this is a wonderful opportunity to learn and raise awareness.

💙 There’s still time to register!

🔗 Reserve your place here:
https://pernicious-anaemia-society.org/event/thyroid-disease-diagnosis-treatment-and-impact-webinar/

💬 Know someone who could benefit? Tag them below or share this post to help spread awareness!

A special thank you to Thyroid UK for helping bring awareness to thyroid health and its impact. 🦋

15/10/2026

💚 Meet Jen, from the US.

For most of her life, Jen, from the USA, knew something was wrong. She just didn't know that Pernicious Anaemia and B12 deficiency could explain so much of it.

Symptoms from childhood. Years of hospitalisations. Severe seizures. Two pregnancies, both at 34 weeks. A second hospitalisation that left her unable to walk without a cane. Chronic demyelination. Severe neuropathy. Brain fog so profound it affected both her spoken English and her sign language.

Through all of it, her serum B12 looked normal - around 400. Nobody checked MMA or homocysteine.

When they finally did, in 2024, her MMA came back at 498. Her homocysteine was elevated. Both intrinsic factor blocking antibodies and parietal cell antibodies came back positive. Her parietal cell antibody titer was 1:640.

"That was the first time I cried for myself in as long as I can remember. It was grief, validation, anger, relief, trauma, and hope all at once."

So many pieces finally made sense. Years of neurological damage. Pregnancy complications. Cognitive decline. Skin and wound healing issues. Decades of being dismissed.

Jen taught herself to self-inject from YouTube. She is still fighting for appropriate treatment. She is still healing. And she is sharing her story so fewer people have to go through what she went through.

"Pernicious anaemia and B12 deficiency can be devastating when missed, but they are treatable when caught early. Awareness matters. Proper testing matters. MMA and homocysteine matter. Listening to patients matters."

Thank you for your courage in sharing this, Jen. 💚

📖 Read Jen's full story:
🔗 https://pernicious-anaemia-society.org/articles/personal-story-jen/

💜 Join PAS:
pernicious-anaemia-society.org/member

✨ 20 Years of Education, Research & Support. This Year Things Change.

14/10/2026

When symptoms don’t make sense, finding answers can make all the difference. ❤️

Lyn Mynott’s own experience of living with an underactive thyroid inspired her to campaign for others and helped shape the charity Thyroid UK.

Join Lyn, CEO of Thyroid UK, and Liz Smart, PAS Chair of Trustees, for a conversation about thyroid disease—diagnosis, treatment and its impact on everyday life.

🦋 Thyroid Disease – Diagnosis, Treatment and Impact

📅 Wednesday 28 October 2026

🕡 6:30–7:30 p.m. GMT / 2:30–3:30 p.m. EDT

💻 Online

🎟️ £5 for PAS members | £15 for non-members

Want to better understand thyroid health, or know someone who would find this useful? Book your place and share this invitation.

https://bit.ly/4dC0GY9

13/10/2026

🏥 670 nurses. One conversation that needed to happen.

This month on our blog, our CEO Katrina Burchell reflects on her recent experience as an invited speaker at a Royal College of Nursing webinar on Iron Deficiency Anaemia.

Speaking to around 670 nurses across the UK, Katrina brought something that clinical presentations alone can't provide - the patient voice. And what emerged was a powerful, two-way exchange.

Healthcare professionals gaining insight from lived experience. A patient gaining deeper understanding of the constraints and responsibilities nurses face every day.
This is exactly how change happens.

The key messages from the event are ones our community will recognise:
Symptoms matter before blood tests show changes. Cognitive, neurological, and psychiatric symptoms can arise long before haemoglobin levels drop - yet too many patients are only caught when the damage is already done.

Anaemia is a symptom, not a diagnosis. Low B12 or iron is never the end of the investigation - it's the beginning. The underlying cause must be found and treated.

One size does not fit all. Standard 12-weekly injections are not a universal solution. NICE guidelines exist for good reason - and they need to be consistently applied.

Education changes outcomes. The knowledge gap around B12 deficiency and PA in clinical practice is real - and it costs patients years of their lives.

"If we listen differently, test differently, and treat differently, we can prevent decades of avoidable suffering."

PAS exists to help make that happen - through patient advocacy, education for healthcare professionals, and a 20-year commitment to raising the standard of care for everyone with Pernicious Anaemia.

📖 Read Katrina's full blog:
🔗 https://pernicious-anaemia-society.org/awareness/redefining-anaemia-and-deficiency-in-clinical-practice

💜 Join PAS and support this work:
pernicious-anaemia-society.org/member

✨ 20 Years of Education, Research & Support. This Year Things Change.

12/10/2026

🩸 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!

12/10/2026

🎗️ 12th October is PA Day.

A day dedicated to raising awareness of Pernicious Anaemia - a lifelong autoimmune condition that is still too often missed, misdiagnosed, and misunderstood.

This year, PA Day feels particularly significant.

In September, PAS joined the B12 Alliance at a Reception at the House of Commons - taking our 20 years of patient evidence, research, and advocacy directly to the people who shape health policy in the UK.

20 years of listening to patients. 20 years of funding research. 20 years of educating healthcare professionals. 20 years of standing our ground on what Pernicious Anaemia actually is - an autoimmune condition, not simply a B12 deficiency - and what that means for how it must be diagnosed and treated.

Awareness matters because it changes things. It changes what patients know to ask for. It changes what healthcare professionals think to test for. And it changes what policymakers believe is worth acting on.

On 12th October, help us continue to make some noise.

Share this post. Tell someone what PA is. Point someone to our website who might need it.
Every conversation started on PA Day is part of how the dial moves.

💜 Join PAS and be part of the change:
🔗 https://bit.ly/4rAihoS

✨ 20 Years of Education, Research & Support. This Year Things Change.

12/10/2026

🎥 Did you know the PAS shop is packed with expert talks you can watch any time?

Whether you were recently diagnosed, are still searching for answers, or have been living with PA for years - our webinar library has something for you.

From understanding how B12 works in your body, to navigating testing, treatment, and self-advocacy - these sessions bring expert knowledge directly to your screen, at a time that suits you.

Every purchase goes directly to supporting PAS - funding research, education, and advocacy for the whole PA community.

📚 Browse the full library and find your next watch:
🔗 https://shop.pernicious-anaemia-society.org/

💜 Not yet a member? Join PAS for access to helpsheets, helpdesk support, and expert resources all year round:
pernicious-anaemia-society.org/member

✨ 20 Years of Education, Research & Support. This Year Things Change.

Address

Ipswich
IP11QJ

Opening Hours

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

Website

https://pernicious-anaemia-society.org/

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