Dear Friend,

Welcome to MPD Support. If you've recently been diagnosed with a myeloproliferative disorder (MPD), or if you're waiting to hear about test results, we're glad that you've found our website. Our goal at MPD Support is to provide information and support for all people with MPDs and their family and friends.
New patients often feel overwhelmed when they are first diagnosed. You may have a lot of questions, and you might find you need a whole new vocabulary to understand what is happening to your body.

You might also have been surprised by your diagnosis. Many people with MPDs feel well and only learn they have this disorder after a routine blood test. Most people have never heard of myeloproliferative disorders, because these disorders are rare. It's not uncommon to feel bewildered and distressed when you first learn you have an MPD. We are here to answer your questions.

What is this disorder? Myeloproliferative disorders affect the levels of blood cells in your body.

What types of cells live in our blood? Blood cells grow in our bone marrow - in fact the marrow is like a factory that produces blood cells. Once blood cells mature, they move out from the marrow and into the bloodstream.

The blood contains a few different types of cells: red blood cells, white blood cells and platelets. When you have an MPD, your blood may have too many or too few of these cells.

• Red blood cells deliver oxygen to our bodies
• White blood cells protect our bodies from disease
• Platelets stick together to form clots to help us heal from cuts or bruises

What will the haematologist do? People with myeloproliferative disorders are often referred by their GP to see a haematologist. The haematologist is a doctor who treats diseases of the blood. He or she will finalise your diagnosis, determine if you need treatment, and decide with you what sort of treatment is required.

Do I have cancer? MPDs are sometimes categorised as cancers of the blood. We often think of cancers as fast-moving diseases that create tumors, but that's not the case with myeloproliferative disorders. MPDs disorders can be indolent, meaning that the disorder doesn't cause the patient many problems; it either remains stable or progresses quite slowly. You may feel well and not require much treatment for very long periods. Some MPDs such as myelofibrosis (MF) require more care but are treatable. Your haematologist can discuss this with you.

What is the prognosis for my disorder? MPDs are treatable disorders. Medications work effectively to control the disease, and many patients with MPDs can do extremely well. It's important to discuss your prognosis with your haematologist, because many different factors such as your age, your general health and which MPD you have will affect your treatment. Your prognosis also depends on whether or not you develop complications, such as clotting or bleeding. The different types of MPDs - essential thrombocytosis, polycythaemia vera and myelofibrosis - fall on a spectrum between less aggressive disorders that those that are more complex to treat, so prognosis is very individual. You may read information on the internet that is not necessarily accurate for your particular situation, so it makes sense to discuss your questions in person with your haematologist.

What else can I do? You should do your best to eat a healthy diet, exercise regularly and stay hydrated. A recent study by the Mayo Clinic in the US suggests that exercise can be particularly helpful in reducing fatigue. Exercise may mean running a marathon if you're an ET patient in your twenties, or walking down the the bottom of the garden if you're an older patient with MF. Do check with your GP and haematologist before making any changes and ask for help in creating a bespoke programme. Although MPDs can't be cured, it's crucial to take good care of yourself. Staying fit can help you avoid additional health risks, keep you feeling positive, reduce any fatigue you may feel, and make you feel stronger.

I need to know more. Please explore our pages to find information on all aspects of MPDs, as well as news on research and a glossary of terms (see suggested links at the bottom of this page.)

How can I get involved? We at MPD Support believe that community is power. We invite you to join our group to become part of our organisation and to learn more about MPD Support programmes. It's important to know that you are not alone. You can meet other patients with similar concerns at our Patients' Forums and through our Peer Support program.

Welcome to our pages and we wish you the best of luck.

Sincerely,

MPD Support

Here are some links you may want to explore next:

Medical information about individual MPDs, including treatment
Emotional support for all people with MPDs
Frequently asked questions
List of haematologists in the UK with a special interest in MPDs

The MPD Foundation in the United States provides information on clinical trials plus a list of support groups for patients based in the US.