Helpful resources for people with Myeloproliferative Neoplasms (MPNs)
The resources on this page have been created to help people with myeloproliferative neoplasms (MPNs), like you, get heard and get help. For example, you might have questions about your disease or symptoms, or you may need help in preparing for an appointment with your doctor – the resources here provide you with the information you need to know.
These materials have been developed in collaboration with the charities MPN Voice and Leukaemia Care, based on the results of the MPN LANDMARK Survey. This included invaluable input from nearly 300 members of the MPN Voice patient community, who shared their thoughts and experiences on what it is like to live with an MPN every day, and 31 physicians in the UK who treat people with MPNs.1
Help for people with MPNs
Everyone's experience with MPNs is unique and sometimes the symptoms you're feeling can be difficult to explain. To help visualise the reality of living with an MPN, we have illustrated MPN symptoms in our Symptom Guide and a series of short animations.
Symptom Guide
The Symptom Guide explains common MPN symptoms and provides information on resources that could help you keep track of them. This could help you understand what's going on with you better, and having a record of your symptoms can help your doctor understand what's going on too. It might also make it easier for you to explain how you are feeling to family and friends, so they can better support you.
MPN animations
These short animations explain why it is important to talk to your doctor or nurse about your symptoms, and suggest some ways you could describe them. You might like to show them to your friends or family to help them understand how you're feeling.
Do you have abdominal pain? The video below might help you.
Some people with MPNs get bone pain, where it feels like their bones are being clamped in a vice.
Feeling extremely tired and worn down all the time can also be a symptom of an MPN, so it’s important to communicate this to your doctor.
Night sweats is one of the most common MPN symptoms. Your doctor can help if they know you are suffering with this.
If you have an MPN, you might feel very itchy a lot of the time. This is called pruritus – do tell your doctor if you have this symptom and explain how it affects your life.
Preparing for an appointment with your doctor or nurse
The time with your doctor and nurse can just fly by. You want to be sure you’ve asked them all the questions you wanted to and told them what they need to know so they can offer you the support that’s right for you. Taking some time to think about what you want to tell or ask your doctor or nurse before each appointment can help you get the most out of your time with them.
To help you with this, we have created a one-page guide to prepare for appointments with your doctor or nurse. The guide includes some tips on things to consider before your next appointment, and questions you may want to ask at the appointment. It also includes a blank section for you to write down any questions that might be important to you, so you can take this along to your appointment.
You don't have to suffer in silence and there are options to help control or alleviate your MPN symptoms. Get Heard. Get Help. Speak with your doctor and get involved in the conversation. #MPNsymptoms
Reference:
- Harrison C, et al. Br J Hematol. 2019;186(3):e1–e4.