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Josie's Story

 

I feel it is important to document my journey with a rare blood cancer, a type of Myeloproliferative Neoplasm (MPN) and the impact it has on my every day quality of life.

 

At the age of 33 I was diagnosed with Essential Thrombocythaemia (ET), one of six types of MPN.  I am now aged 40 and I have suffered through years of symptoms that doctors could not attribute to a particular disease or problem. 

 

In March 2007; a month after I had a miscarriage, I started having severe headaches. The onset was sudden, and they lasted for weeks. My health deteriorated further, and after having symptoms that mirrored a CVA/TIV (Stroke/mini-stroke) I ended up at emergency. Additional tests and scans all came back clear, no sign of stroke. I was then referred to a neurologist who believed I might have hemiplaegic migraine-- where parts of your body can become 'paralysed' during a migraine. This diagnosis, however, didn't sit with me-- I just didn't feel it was right, and I thought it was necessary to seek a second opinion. During this process I also started to have severe pain on my scalp and face. 

 

After visiting many specialists, some who even seemed distant and disinterested in my health, I found a neurologist who, like me, was not convinced of the hemiplaegic migraine diagnosis. After connecting Thrombocytosis that continually showed up in my test results to my current symptoms I was referred to a haematologist. The Haematologist/Oncologist told me I had Essential Thrombocythaemia, finally I had a diagnosis, it was now the end of 2008. I also found out I was JAK2 positive. I started medication and within days, my headaches had ceased, the scalp and face pain disappeared. What is hard about this disease, is its rarity and therefore the lack of experience of many health practitioners in recognizing and treating the symptom burden and progression of the disease. 

 

I spent a couple of years coming to grips with the loss of my ability to work, in a role that I cherished. It has been a real period of grief, loss and acceptance. MPN is a chronic disease and one I'm going to have to live with and manage. There are many new medications in trial and also being used overseas, which help to relieve many of the symptoms, and I hope to be able to access these some day. 

 

Being able to communicate with others with MPN has been invaluable. To read about other's journeys and their symptoms, frequently the same as mine, is validating and helpful. I have set up a Facebook page called 'MPN Australia Myeloproliferative Neoplasm Community' and in less than a month we've had 126 people from Australia & New Zealand join up!  I have the most supportive partner, who works full time and comes home and looks after us both. I'm just counting my blessings that I have today and that I am surrounded by supportive people. I feel such gratitude. I couldn't want or need anything more.