MPN Voice

WE WANT TO HEAR FROM YOU! | Follow-Up Q&A Session

Did you catch our latest vlog on the Global Interferon Shortage? The insights from the 520+ patients who shared their experiences have been invaluable, but we know you might still have questions about what this means for your personal treatment journey.

We are heading back into the studio at the end of May! 🎙️
Nona Baker will be sitting down again with our panel of experts: Dr. Alicia Kahn, Llewellyn Cadman-Davies, and Dr. Priya Sriskandarajah to ask the questions that matter most to you.

What’s on your mind?
• Are you concerned about the transition back to Pegasus?
• Do you have questions about the clinical differences between formulations?
• Want more details on those "speeding train" new drug trials and vaccines?
• Are you curious about how the survey data is being used to talk to NHS England?
Whatever it is, no question is too small.

How to Submit Your Questions:
📩 Email: [email protected]
📌 Subject Line: "Global Interferon Shortage Question"
🗓️ Deadline: Friday, 15th May 2026

Don’t miss out! If you haven't watched the original vlog yet, catch up now via the link in our bio or at https://linktr.ee/Mpnvoice.

Your voice helped us understand the shortage so now let us help you understand the path forward. 🔴⚪

What is Essential Thrombocythaemia (ET)? 🩸
ET is a rare blood cancer that causes your bone marrow to produce too many platelets. While platelets are vital for clotting, having too many can make your blood "sticky," increasing the risk of clots. Paradoxically, because these platelets don't always function correctly, ET can also lead to bleeding issues.

The Facts:
• It affects primarily adults over 60, but it is increasingly diagnosed in younger people, especially women under 40.
• Not Inherited: It is an acquired genetic change, not something passed from a parent.
• The Variants: Most patients have a mutation in the JAK2 (~50-60%), CALR (~30%), or MPL (~5-10%) genes. These act as the "instruction manual" for cell growth.

Common (but not all) Symptoms (Many feel completely well):
🔹 Fatigue
🔹 Persistent headaches or dizzines
🔹 Coldness, tingling, or burning pain in hands and feet
🔹 Easy bruising or nosebleeds
🔹 Vision disturbances (silent migraines)
🔹 Redness or swelling in extremities

Diagnosis & Risk:
If a routine blood test shows a high platelet count, a Haematologist will rule out other causes like infection or iron deficiency. They will then assess your "Risk Level" based on your age, white cell count, and history of clots to build your personalized plan.

Treatment: The Balancing Act
The goal is to reduce complications while keeping side effects low.
1. Watchful Waiting: For low-risk patients, regular check-ups and low-dose Aspirin may be all that’s needed.
2. Cytoreduction: Medications like Hydroxycarbamide, Interferon, or Anagrelide to lower platelet production.
3. Lifestyle: Managing blood pressure, cholesterol, and stopping smoking are the most powerful tools you have to protect your long-term health.

Prognosis:
With proper management, most people with ET live a normal or near-normal lifespan.

The key is staying informed and connected with your clinical team.
Need a "Buddy" to talk to? If you’ve just been diagnosed with ET, our Buddy Program can connect you with someone who has been where you are. Visit the link in our bio to learn more. 🧡💙