Fatigue is a big challenge for many patients with myeloproliferative neoplasms (MPNs), perhaps the worst in patients with myelofibrosis (MF), but clearly it is present in many patients with essential thrombocythaemia (ET) and polycythaemia vera (PV) as well. Multiple things can contribute to this including the disease, medications that are used to treat the MPN…
People with myeloproliferative neoplasms (MPNs) can use several different techniques to manage the emotional impact of having a chronic illness. Take control with stress reduction and cognitive techniques. Reduce stress Techniques such as yoga and tai chi and meditation have proven to be effective at reducing stress and in some cases, pain, in several scientific…
Deep vein thrombosis (DVT) is the formation of a blood clot (thrombus) within a deep vein, predominantly in the legs. For patients with myeloproliferative neoplasms (MPNs) it is important to avoid the risk of DVTs wherever possible. Common signs and symptoms of DVT include pain or tenderness, swelling, warmth, redness or discolouration, and distention of…
Try these tips to communicate with the people in your life. It’s happened to all of us: We try to explain our myeloproliferative neoplasm (MPN) to family and friends and get a blank, confused look in response. Many people in our lives are unfamiliar with MPNs but excellent communication can help and in close relationships it’s…
Invisible/“Silent” diseases It can be very distressing for people diagnosed with a myeloproliferative neoplasm (MPN) to find that others are not sympathetic. When you and your haematologist look at your blood test results, it’s often clear that everything’s not quite right but other people in your life may not see or understand these changes. MPNs…
People with myeloproliferative neoplasms (MPNs) can find themselves coping with many stressors. For some patients, MPNs are chronic illnesses which can be life-threatening. If you are diagnosed with an MPN you may feel low in mood or fluctuate into and out of depression. The impact of loss Whilst some patients face less difficult situations, others…
Download detailed information here about myeloproliferative neoplasm (MPN) treatments. The treatment and disease leaflets are A5 sized, these can be printed onto single sided A4 paper (US substitute letter or legal) or in booklet form. You can download detailed instructions and illustrations for printing a booklet here, or follow the instructions for your own printer. If…
Get the balance right. Combine the best of conventional medication with complementary therapies to find a plan that works for you. Many people with myeloproliferative neoplasms (MPNs) are frustrated with the lack of choice and potential side effects associated with conventional treatments. Others feel concerned about the long-term risks posed by medications. Beyond conventional treatment…
When you were first diagnosed your haematologist may have told you the disheartening news that “there is no cure.” It’s true that none of the current medications available can eradicate your myeloproliferative neoplasm (MPN) but new research is pointing the way toward better treatments and we hope one day a real cure for patients with…
Myeloproliferative neoplasms (MPNs) are usually diagnosed in older patients, but people who are young enough to conceive need to consider their contraceptive choices carefully, whilst women approaching menopause and offered hormone replacement therapy (HRT) also need to be informed of the potential added risks of HRT. Contraceptives – considerations/risks As with any decision concerning contraception…