MPN Voice

The power of "Support" 🧡

Living with an can be a lonely experience. Whether you are newly diagnosed or navigating a change in your condition, it’s normal to feel a mix of confusion, isolation, or fear. While friends and family are vital, they might be just as overwhelmed as you are.

Sometimes, the best person to talk to is someone who has already walked the path you’re on.

What is the MPN Voice Buddy Programme?
Our peer support initiative connects you with a "Buddy" who is a fellow patient who understands the emotional side effects of a chronic illness. They don’t just provide information; they provide empathy.
How it works:
✅ One-to-One Connection: Be matched with a supporter who has a similar diagnosis.
✅ Flexible Support: Chat via email or phone or whatever feels most comfortable for you.
✅ Real Understanding: Ask the questions you might feel "silly" asking a doctor, and talk through the daily realities of living with an MPN.

Why peer support matters:
This isn't just about clinical facts; it's about the "emotional logistics" of a diagnosis. A Buddy can help you navigate the "invisible" hurdles of fatigue, anxiety, and the mental load of a rare blood cancer. The relationship is a two-way street that fosters strength for both the supporter and the recipient.

How to get involved:
Whether you are looking for a Buddy to help you through a tough week or you’ve reached a place in your journey where you feel ready to support others as a volunteer, we want to hear from you.

🔗 Find out more and sign up here: https://www.mpnvoice.org.uk/get-involved/buddy-programme/ Or via our bio link

Have you been helped by a Buddy, or are you currently a volunteer? We would love to hear your stories in the comments. Let's show the community that no one has to face this alone. 👇

Full blood count reports can be confusing.

People with are sometimes baffled by the numbers they see on their full blood count (FBC or CBC). Haematologists use them to keep track of your condition and to make treatment decisions. They can show whether treatment is working and how the disease is evolving.

The full blood count report shows the number of red blood cells, white blood cells and platelets in the blood, and about the size and shape of these cells. The report also shows the normal range of blood cells a healthy person has for comparison.

Terms:
Your Haemoglobin (HB) level shows whether you are anaemic or polycythaemic, in other words whether you have too few or too much haemoglobin.

Packed cell volume (PCV) and haematocrit (HCT) mean the same thing – they are a measure of your blood thickness. Haematologists refer to your PCV rather than your haemoglobin level to make treatment decisions.

Your mean corpuscular volume (MCV) indicates the size of your red blood cells. This often goes down with iron deficiency and up with Hydroxycarbamide treatment in MPN patients.

White cells are the “soldiers” of the blood; they help to fight infections. If your white cell differential is low you may be at risk of infection. White cells may be high in all MPNs and are increasingly thought to be associated with a risk of thrombosis.

White cell differential: This shows the number of different white cells in your blood.

Neutrophils are a type of white blood cell that help to fight bacterial infections. Your neutrophil count will usually go up when you have an infection and go back to normal when the infection has resolved. Some treatments used for MPN can lower the neutrophil count and may increase the chance of getting an infection.

Platelets - When you have an injury, platelets work together with clotting factors to form a blood clot. The platelets become “activated” – they change to a spiked form, which allows them to stick to other activated platelets and clotting factors at the point of injury, forming a mesh or clot.

Do you understand your bloods?

To the young MPN warriors: We see you. 🧡💙

One of the hardest parts of being diagnosed with an MPN in your teens, 20s or 30s is feeling like you’re the "only one" in the waiting room.

The questions you have are different. You aren't just thinking about counts; you're thinking about:
✅ Building a career with fatigue.
✅ Starting a family and pregnancy safety.
✅ Staying active and keeping your social life.
✅ The mental toll of a lifelong diagnosis.

The MPN Voice Young Patients Network was built specifically for you. We are a global community of younger patients supporting each other through the unique hurdles of living "young with an MPN."

🚀 THE BIG ANNOUNCEMENT:
Our next Young Patients Forum is happening in London!
📍 Where: London (Save the date!)
📅 When: Saturday, 5th Sept 2026
⏰ Time: 1:30 PM – 6:00 PM

This isn't just a medical talk, it’s a chance to meet people who actually get it. No explanation needed.

Check out our Young Patient Leaflet and, when registration opens, grab your spot for the London Forum before it fills up.

Young Patient Leaflet - via https://linktr.ee/Mpnvoice

Tag a friend below who needs to know they aren't alone in this! 👇

Huge Congratulations to Dani!

Today, Dani completed the AJ Bell Great Bristol Run 2026 Half Marathon all in support of MPN Voice, a charity that means the world to him and his family.

His mum was diagnosed with an MPN 20 years ago, and throughout her journey, MPN Voice has been a steady source of support. From trusted medical information to patient forums and vital research funding, the charity has helped families like his navigate life with a rare blood cancer.

MPNs (Myeloproliferative Neoplasms) are rare, chronic, and currently incurable blood disorders that affect how blood cells are produced in the bone marrow. They can cause symptoms like fatigue, night sweats, blood clots, and complications that impact daily life. While treatments can help manage symptoms, more research is urgently needed. That’s why today mattered.

Dani set out to raise £500 to help MPN Voice continue its life‑changing work and every mile he ran was for his mum, and for everyone living with an MPN. Oh and he smashed his target...

💙 We’re incredibly proud of you, Dani.
Your determination, heart, and commitment to the MPN community shine through every step you took today.

And to everyone who has supported him, thank you. Together, we’re helping move closer to better treatments and, one day, a cure.

What is Myelofibrosis (MF)? 🩸
Myelofibrosis is a rare, blood cancer that disrupts your body's normal production of blood cells. It causes extensive scarring (fibrosis) in the bone marrow, the "factory" where your blood is made. As the marrow scars over, it can no longer produce enough healthy red cells, white cells, or platelets.

How it Develops:
• Primary MF: Develops on its own without a prior condition.
• Secondary MF: Develops after a patient has already lived with Essential Thrombocythaemia (ET) or Polycythaemia Vera (PV).
• The Switch: Like other MPNs, it is often driven by a mutation in the JAK2, CALR, or MPL genes. It is acquired during your lifetime and is not inherited.

Symptoms (but not all):
While some have no symptoms early on, most will experience:
⚠️ Severe Fatigue: Often caused by anaemia (low red blood cells).
⚠️ Splenomegaly: An enlarged spleen that causes a "full" feeling or pain under the left ribs.
⚠️ Night Sweats & Fever: Signs of the body’s inflammatory response.
⚠️ Bone Pain: A result of the changes occurring within the marrow.
⚠️ Easy Bruising: Due to low or poorly functioning platelets.

Diagnosis:
Haematologists look at more than just a blood count. They often use Abdominal Ultrasounds to measure the spleen and a Bone Marrow Biopsy to look for the level of "fibrosis" (scarring) and immature "blast" cells.

Treatment:
1. JAK Inhibitors: Medications like Ruxolitinib or Momelotinib help shrink the spleen and improve quality of life.
2. Managing Anaemia: Through blood transfusions, hormone shots (EpO), or specific tablets (Danazol).
3. The Potential Cure: A Bone Marrow Transplant (Stem Cell Transplant) is currently the only way to cure MF, though it carries significant risks that must be discussed with your specialist.

Prognosis & Outlook:
MF is a complex journey, and the outlook varies greatly between individuals. Some patients remain stable for over 15 years, while others require more intensive intervention quickly.

You are more than a diagnosis. Whether you are managing symptoms or considering a transplant, the MPN Voice community is here to support you and your family every step of the way.

Meet the Medical Director: Professor Claire Harrison

Professor Claire Harrison is one of the world’s leading experts in myeloproliferative neoplasms (MPNs) and the driving force behind MPN Voice.

A graduate of Oxford University Medical School, Claire became a consultant at Guy’s and St Thomas’ Hospital in 2001, where she now serves as Deputy Chief Medical Officer. Her clinical focus is MPNs, and her work has shaped the global landscape of treatment and research.

Claire’s leadership in clinical trials and translational research has contributed to the approval of several groundbreaking therapies, including ruxolitinib, fedratinib, momelotinib, and pacritinib. Over the past decade, she has published more than 300 academic papers, earning national and international recognition for her contribution to the field.

But Claire’s impact extends far beyond the clinic. She founded MPN Voice (MPD Support as it was) alongside a group of volunteer patients who shared her vision to ensure that everyone living with an MPN has access to accurate information, compassionate support, and a strong community.

Outside of her professional achievements, Claire is a proud mum to Henry and Edward, and she’s passionate about food, family walks, and time spent outdoors. Her warmth and energy reflect the same values that drive MPN Voice connection, care, and community.

Her work continues to inspire both patients and professionals, reminding us that progress in medicine is most powerful when it’s rooted in partnership.