Hi my name is Pamela. I am 55 years old and I live in Western Australia.
I was diagnosed at the age of 47 after a high platelet level was found in a normal health check. My father was also diagnosed at the same time although he is thirty years my senior. At this time I was treated by the same specialist as him and was very worried and frightened about what was going to become of my future. I had many questions for the specialist and did not know I was Jak 2 just ET.
This was a really hard time for me as all the questions I had resulted in answers that depressed me terribly. For example I remember asking ‘should I have a bone marrow transplant?’ and his answer was simply that I will probably die of a simple cold as time goes by my immune system will get so weak, I will no longer manage blood transfusions and simply die! I got in a very depressed state as from what I understood I only had from 5 to 15 years to live max. I looked for advice from natural doctors and tried hard to look after myself. After some time talking to other people and doing some research on the internet, stories like these from other MPN patients indicated that things may not be as bad as I thought. I went back to my GP and asked to be referred to a different specialist that I had heard about. This was the best thing I could have done! With my first specialist I felt like I was the only young person to have the problem and I wouldn’t be long dead after my father. My new specialist has been treating me for over seven years now and has given me much confidence. I am only on aspirin for which I need to take a stomach lining tablet as well but other than that I take some natural medications for bones and vitamins etc. I honestly believe stress is the one thing that will kill you so I try not to get stressed and my only hope is that when the time comes when I need harsher drugs, there will be something else except chemotherapy drugs to offer as I do not want to be on them for a long time.
