Stay connected! Share and follow:

Leukaemia CARE Careline

We're here to talk | 24-hours a day

08088 010 444

FREE from landlines & most major mobile networks

Be MPN aware!

written by

Leukaemia Care, Charity

  • megaphone-1480342_1920

Today, Thursday 8th September, is Myeloproliferative Neoplasms (MPN) Awareness Day. Celebrated on the second Thursday of every September (during Blood Cancer Awareness Month), MPN Awareness Day is a day dedicated to help raise awareness of myeloproliferative neoplasm disorders. It is an opportunity for the MPN community to come together to share experiences, connect with other patients, and discover support services available to patients and their families.

MPNs are a group of blood disorders that affect the bone marrow, the spongy tissue in our body where blood cells are produced. When someone has an MPN, it means that the production of their blood cells are not working properly. This causes symptoms related to blood cell overproduction or shortages, such as dizziness, headaches, itchy skin, tiredness, shortness of breath, repeat infections and unexplained weight loss.

With around 1,900 patients diagnosed with an MPN in the UK each year, they are considered a rare group of blood cancers. The three types of MPNs most frequently diagnosed are separate disorders which each affect blood cell levels in a different way. These types are:

Polycythaemia vera (PV)
Essential thrombocythaemia (ET)
Myelofibrosis (MF)

In order to raise awareness of MPNs on the 4th Annual MPN Awareness Day, Mary explains how she was diagnosed with essential thrombocythaemia (ET) and what her journey has been like since that day in April 2011.

“I am a 63 year old retired nurse specialist. I took early retirement aged 57 after a rewarding career in palliative care. My life was altered dramatically when I was diagnosed with essential thrombocythaemia within my first year of retirement.

I had been treated for hypertension for many years and an annual blood test was part of my ongoing monitoring. A test in April 2011 showed an abnormality, more tests followed a few days later which led to an urgent GP appointment to" discuss my blood count". With my nurse's hat on I assumed this would be a mild anaemia and expected a prescription for iron and another test a month later. How wrong I was! My doctor was kind but also very clear and as the consultation went on I realised this was something way more serious than anaemia. I was told that I had a very high platelet count which she explained was due to a myeloproliferative disease. By this time most of my professional knowledge had gone out of the window. I had no symptoms apart from headaches, which we both thought were due to migraines. In hindsight, they were most likely due to my disorder.

An urgent referral was made to a haematologist. When I left the surgery I was so stunned I could barely remember how to drive. Telling my family was not easy (especially my elderly mum), particularly as I did not know then exactly what was wrong with me. I quickly met with my haematologist and she was able to tell me I probably had ET and at that point the only treatment I needed was low-dose aspirin. A further appointment a couple of weeks later confirmed the diagnosis. My haematologist told me that my treatment was called "watch and wait". Along with the aspirin, the main aim of treatment was to prevent the formation of blood clots leading to such things as a stroke or heart attack. Now things did not seem so gloomy.

May 2013, however, saw a big change. My platelet count became too high, so I needed to start oral chemotherapy. Things again felt very much more serious. I was used to supporting people on chemo, not being the one having it; this felt all wrong. My friends and family were very supportive.  I struggled with the treatment, feeling sick, losing weight and I felt very fatigued. It took around two years to settle down on the treatment. I still have issues with mouth ulcers and tiredness, but I know how to cope much better now.

I understand that this is a cancer without a cure but overall, I am well and able to lead a relatively active life. I am very involved with my church and have even been to Uganda on two occasions. I feel very privileged to have such good support from family and friends as well as Leukaemia Care, my GP and haematologist.”

This Blood Cancer Awareness Month we are raising awareness of the impact a blood cancer diagnosis can have on a patient and their family. If you want to help raise awareness, why not donate £2 to receive your “Be Blood Cancer Aware” ribbon. Visit our campaign page for more information on how you can get involved with Blood Cancer Awareness Month.

Read Comments

  • Be first to comment on this article.

Get Involved! Add a comment...

*Your email address will not appear on the site

(Tick to hide your name when this comment appears on the site)