Newsletters

• Everyday challenges
  • Contraceptives and HRT
  • Preventing DVTs
  • Renewing intimacy
  • Coping with side effects
  • Cost of medications – exemption certificate
  • If you need surgery
  • Itchy skin
  • Living abroad
  • MPD ID Cards
  • Planning for travel
• Newsletters
• Videos
• Your state of mind
  • What you may be feeling
  • Invisible diseases
  • Communicating
  • Coping long-term
• If things get serious
  • After a serious clot
  • End-of-life
  • Hospice care
  • Reducing pain and symptoms
• Ways to feel better
• MPDs in pregnancy
  • After delivery
  • During pregnancy
  • Miscarriage
  • Options after miscarriage
  • Planning before pregnancy
• Staying well
  • Staying active
  • Keeping track
  • Reducing stress
  • Eating right
  • Know the signs
• Treatment decisions
• Talking with your doctor

If you are looking for treatment leaflets they can be found in the Treatment section.

MPD Voice Newsletters

March 2013
In this issue you will find:

• NICE recommendations for Ruxolitinib – latest news on the preliminary decision taken by NICE (the National Institute for Health and Clinical Excellence) not to recommend the use of Ruxolitinib for treating disease related splenomegaly or symptoms in adults with MF
• Update on UKOSS (the UK Obstetric Surveillance System) research into MPD and pregnancy outcomes – Dr Sue Robinson, Haematologist at Guy’s & St Thomas’ Hospital explains the background and progress of the study which was launched in 2005 to survey a range of rare conditions in pregnancy
• Patient story – Jennie Barnes has ET and was told last year that it had transformed into leukaemia, Jennie has shared extracts from her honest and moving blog she wrote following the news
• Benefits and financial help for people living with MPDs – working age and pension age benefits, a brief guide to benefits/financial help that may be available to people living with MPDs
• Epidemiology study – the study has now moved onto the next phase with recruitment into the pilot study  starting March 2013
• Fundraising events update

November 2012
In this issue you will find:

• Searching for a cure Ruxolitinib a new hope for patients with MPDs – an interview with Professor Srdan Verstovsek, Department of Leukemia, The University of Texas
• Health matters – top 10 tips for fighting fatigue from Professor Ruben Mesa, The Mayo Clinic, Arizona
• Epidemiology study – update on the study
• Patient story – Mark Hill shares his recent experience on the UK MAJIC drug trial
• Fundraising and forum news

May 2012
In this issue you will find:

• Epidemiology study – MPD Voice funds a study which will look at the causes of MPDs
• Pruritus (itching) – hints and tips from two patients on ways to combat this common symptom
• Drug trials – a new trial called MAJIC using the JAK inhibitor Ruxolitinib
• Patient story – Tim Ellis talks about his decision to have a bone marrow transplant (BMT)
• Fundraising and forum news

February 2012
In this issue you will find:

• The First UK National patient day a great success
• Exciting developments, trials and drug launches in 2012
• Advice on communication issues MPD patients face
• National patient forums in 2012
• Pauline Collis speaks about managing the ups and downs of PV
• Fundraising events for 2012 
• Epidemiology study

May 2011
In this issue you will find:

• Research update on JAK inhibitor trials, PEGASYS trial and more
• House of Lords gala and other events raise £40,000
• What is von Willebrand Syndrome?
• PT-1 trial in low-risk and intermediate risk essential thrombocythaemia
• Spartathlon runner raises funds for research
• Integrative medicine: what it is and how can it benefit people with MPDs
• Upcoming Walk for Cure and 2011 skydiving event

September 2010
In this issue you will find:

• MPD Support funds study of drug vorinostat in ET and PV
• Stories of people with MPDs: Gina was diagnosed at age 12
• Cholesterol control matters when you have an MPD
• Palliative care is comfort care
• Low-dose aspirin: always a good idea?
• Abseilers raise £74,000
• French Alps Cycling Challenge

April 2010
In this issue you will find:

• MPD origins: JAK2 a middle step
• Stories of people with MPDs: Patient narrowly avoids amputation
• Exercise helps everyone with an MPD
• Side effects: how to deal with dry skin
• If you need an operation
• Survivorship: After recovery from a bone marrow transplant

December 2009
In this issue you will find:

• Does JAK2 status alter your prognosis?
• Stories of people with MPDs: JAK2 inhibitor trials
• What are MPNs (myeloproliferative neoplasms)?
• Survey of pregnancy in MPDs
• End of life: a nurse’s perspective

July 2009
In this issue you will find:

• MF drug trials in the UK
• Stories of people with MPDs: Cyclist battles PV, stays fit
• Do high white cells imply greater risk?
• Understanding drug trial lingo
• Options when pregnancy ends in miscarriage
• Vitamin B12

December 2008
In this issue you will find:

• Go-ahead for UK trials of new drugs
• Stories of people with MPDs: Starting a family when you have an MPD
• When is “no treatment” a good option
• Reading your own blood test results
• Renewing intimacy when you have an MPD
• Vitamin D and cancer

October 2007
In this issue you will find:

• JAK2 spurs scientists to develop better treatments
• Stories of people with MPDs: Bone marrow transplant
• Q&A Enlarged spleen
• Peer support
• Preventing DVTs while traveling
• 8 crucial steps to protect your health
• Why get involved? Benefits of participation

September 2006
In this issue you will find:

• JAK2 discovery: rethinking the MPD paradigm
• Recognising signs of a stroke
• Top tips for coping with medications
• Signs of a DVT
• Travel tips
• Mayo Clinic and Harvard discover new mutations