If you’ve recently been diagnosed with a myeloproliferative disorder, you may have a lot of questions. We’re here to help you keep your life on track.
It’s not uncommon to feel bewildered when you first learn you have essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF). The best way to fight back is to learn more about these disorders, understand the treatment options available to you and discover ways to feel your best.
Myeloproliferative disorders affect the levels of blood cells in your body. When you have an MPD, your body produces too many or sometimes too few blood cells, for instance platelets, red blood cells and white blood cells. The different types of MPDs – essential thrombocythaemia, polycythaemia vera and myelofibrosis – fall on a spectrum between less and more aggressive disorders. You can learn more about the individual disorders in our About MPDs section.
MPDs – also called MPNs or “myeloproliferative neoplasms” – are slow-growing blood cancers. The words “cancer” and “neoplasm” can evoke fear – but often myeloproliferative disorders remain stable or progress quite slowly.
MPDs are quite rare – roughly 1-2 in a population of 100,000 develop these disorders in any given year. ET is the most common myeloproliferative disorder, and MF is the least common. While 15-20% of people with ET are diagnosed under age 40, only 15% of people with PV and very few people with MF are diagnosed this young.
Many people with MPDs have an excellent prognosis, and with proper care and medical attention will live long lives. In some cases MPDs are more aggressive, and people with these disorders can have a poorer prognosis. Your prognosis depends not only on which MPD you have, but on your age and your general health. Your haematologist can give you more information about your individual situation.
With proper medical care people with ET and PV can have a near-to-normal life expectancy. Your prognosis depends in part on your age at diagnosis, your general health and whether or not you develop complications such as clotting or bleeding. It’s important to work with your haematologist to manage your condition and your overall health. Healthy eating, regular exercise and stress management are all important. You can learn more on our ET and PV pages and in our Living with MPDs section.
Myelofibrosis causes fibrous material to build up inside the bones, preventing the body from producing blood cells effectively. It is a serious illness, but it often develops slowly over a long period of time, so prognosis varies by individual. There are many treatments available and new drugs are under trial that are showing effectiveness in treating MF. Please talk with your haematologist for more information about your situation. You may also visit our Myelofibrosis page to learn more.
People with ET and PV have a higher risk of stroke and heart attack and other blood clots. The good news is that this risk can be substantially reduced with the right medical care and medications. Your doctor may suggest you take a low-dose aspirin every day. This small step will reduce your chances of suffering a clot. It’s essential to stop smoking and maintain a healthy weight. Regular exercise will also reduce your chances of suffering a clot. Talk with your doctor about reducing cholesterol as well. Different people have different levels of clotting risk, so if you are concerned talk with your GP and haematologist.
Complications depend on which medication you are taking, but many people with MPDs find that they do not suffer significant side effects. Side effects can also be reduced and managed – talk with your haematologist for ideas, and explore our website for tips and complementary therapies that can help.
It is extremely rare for MPDs to run in families and for most people the answer to this question is no. If you are concerned please talk with your haematologist.
It’s important to eat a healthy diet, get regular exercise, stay hydrated and in general to take very good care of yourself. Staying fit can help you avoid additional health risks, keep you feeling positive, reduce any fatigue you may feel, improve your circulation and make you feel stronger. Reading up, learning about your disorder and discovering what you can do yourself can give you a greater sense of control. You can learn more in our Living with MPDs section.
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The words “cancer” and “neoplasm” can evoke fear – but MPDs often remain stable over many years or progress quite slowly.