Helpful resources for people with Myeloproliferative Neoplasms (MPNs)
Helpful resources for people living with myeloproliferative neoplasms (MPNs)
What are MPNs?
MPNs are a group of rare blood cancers in which the body produces too many red blood cells, white blood cells or platelets, which can prevent them from functioning properly.1 The problems and symptoms caused will depend on the type of MPN and vary from person to person.
There are three main types of MPN:2,3
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Myelofibrosis |
Polycythaemia vera |
Essential thrombocythaemia |
|---|---|---|
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Myelofibrosis (MF) is a blood disorder that affects the way blood cells are produced in the body. People over the age of 60 are most likely to have this disease, with men and women equally at risk. |
People with polycythaemia vera (PV) produce more red blood cells than normal. PV may also affect the production of other blood cells, for example, platelets and white blood cells. |
People with essential thrombocythaemia (ET) have an elevated platelet count; their blood contains too many platelets. |
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|
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1/100,000 |
3/100,000 |
30/100,000 |
The information on this page should not be considered an alternative to advice from a healthcare professional.
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What is it like to live with an MPN?
What are the symptoms of MPNs?
Keep track of your symptoms with the free MPN Tracker
What is it like to live with an MPN?
If you are living with an MPN and experience burdensome symptoms, you are not alone.
In a Novartis-sponsored MPN LANDMARK survey, 97% of participants experienced MPN symptoms, with over 70% reporting that their MPN reduced their quality of life.
But there is no need to suffer in silence.
Talk to your healthcare professional so that you can get heard and get help.
What are the symptoms of MPNs?
Your MPN symptoms can be difficult to explain to your doctor. In collaboration with MPN Voice and Leukaemia Care, based on the results of the MPN LANDMARK survey with input from nearly 300 members of the MPN Voice patient community and 31 physicians in the UK, the following resources were created to help you understand and explain your symptoms.
Struggling to find the right words to describe how you feel? Click on the icons below to see a short animation that may help.
Common symptoms of MPNs include:
Abdominal pain
Abdominal pain can feel like
‘being blown up like a football’
Bone pain
Bone pain may make you feel like your
bones are ‘clamped in a vice’
Fatigue
If you suffer with fatigue, completing daily
tasks may feel like ‘wearing concrete shoes
up a flight of stairs’
Night sweats
Night sweats can feel like
‘waking up in a puddle’
Feeling itchy
Having an MPN may make you feel like you
have ‘100 itches that can’t be scratched’
Talk to your healthcare professional to help them understand your symptoms so that they can give you the help you need. Don't suffer in silence. Get Heard. Get Help.
Keep track of your symptoms with the free MPN Tracker
If you have been diagnosed with MF, PV or ET, then you may already know the importance of tracking your symptoms on a regular basis.
For all MPNs, there is an internationally recognised, standard set of 10 questions that are used to assess the impact of your MPN symptoms. This is called the MPN10 symptom scoring tool. You can rate your experience of each of the 10 symptoms on a scale of 1–10. Your total score out of 100 is called your 'total symptom score' (TSS). Keeping a record of your symptom scores over time can help you identify any changes in your health and guide conversations with your healthcare professional.
You can learn more about the MPN Tracker in the video below:
This MPN10 Tracker website has been developed by Novartis in partnership with patient advocacy organisations and medical experts to provide a useful symptom tracking tool for patients living with an MPN, helping them manage their disease.
The MPN Tracker is also available as a downloadable form. You can use this to keep track of your symptoms and how they change over time. Remember to take this with you to your appointments, so you can talk about your symptoms and help your healthcare professional understand how they impact you.
Useful resources to understand, track and share your MPN symptoms and concerns
The resources below are designed to help you understand your condition and explain how you feel so that you can get heard and get help:
The MPN symptom guide can help you recognise your symptoms and understand their cause. It can help you explain your symptoms to your healthcare professional, as well as to your friends and family. This may make it easier for you to talk to your family and friends, so they can better support you too.
A quick guide that outlines everything you need to know about MPNs, including explanations of medical terms, the most common symptoms and what your treatment could include.
There is no need to suffer in silence
Everyone’s experience of living with an MPN is unique, and sometimes the symptoms you’re feeling can be difficult to explain. The resources on this page are designed to help you explain those feelings so that you can get heard and get help.
Novartis is committed to improving the experiences and outcomes of patients who are living with MPNs and other blood cancers, and continually strives to help optimise patient care.
Join the conversation
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References:
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MPN Voice. What are MPNs? Available at: https://www.mpnvoice.org.uk/about-mpns/questions/what-are-mpns/. Last accessed April 2021.
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Titmarsh G, et al. How Common are Myeloproliferative Neoplasms? A Systematic Review and Meta-analysis. Am J Hematol. 2014;89:581–587.
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Brière JB. Essential thrombocythemia. Orphanet J Rare Dis. 2007;2:3.
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Harrison C, et al. UK results from the myeloproliferative neoplasms (MPN) landmark survey on the symptom, emotional and economic burden of MPN. Br J Haematol. 2019;186:e1–e4.
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