I was diagnosed aged 44 with essential thrombocythaemia (ET), 20 years ago. In those “dinosaur days” the internet information was just for the privileged few who had access to medical sites and there wasn’t very much even then. My GP had to go and look up the condition and told me that at that time…
I would like to share my story. About 8 years ago, while on holiday in Spain, I started to have daily headaches which I blamed on the stress of being driven to and around, too many busy cities in a fortnight. I also began to experience a flash of bright light when opening my eyes…
Brian 74 writes on 20th February 2014 I was due to have the first of two operations on my knees. Accordingly, I had a pre-op examination three weeks before. On the day after the pre-op I received a phone call from the hospital to say that the operation had been cancelled because I had a very…
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 diagnosed with myelofibrosis (MF) in 2011. I was fortunate to have been diagnosed early because I competed in many difficult ultra distance mountain bike races. I consider the early diagnosis to be ‘fortunate’ because without it, I would have pushed myself very hard in a tough race and would probably have had a…
My name is Helen and I was originally diagnosed with ET in October 1991 when I was 39 years old. It had been a fairly hot summer and I was suffering from increasing pain and discomfort in my feet. The only way of relieving the pain was using what my children referred to as Mum’s…
My name is Gina and I have essential thrombocythaemia (ET). I am one of the rare people to be diagnosed with a myeloproliferative neoplasm (MPN) as a child: I was diagnosed at the age of twelve. Today I’ve completed undergraduate and graduate degrees in the disability sector. I lead a busy and active life working…
I was diagnosed with Myelofibrosis when I was 33 years old, just six weeks after the birth of my eldest daughter who is now 14. A few weeks after the birth, I had noticed a lump in my stomach and asked my GP about it. After scans and blood tests and bone marrow biopsies, the…
I am now 65 and was diagnosed with PV in 2005 when I was 57. I had a Well Woman blood test which showed my red blood count was close to 55 yet the previous year the counts had been normal. I was referred to the Radcliffe Hospital and during the consultation I had my…
Sally writes I had no serious illness before PV. I was asthmatic but well controlled with Milflonil and it never stopped my very active life, breeding, competing at top level with horses and ponies , and being a busy professional artist and sculptor. Diagnosis in 2010 was a life changing shock. That same year I…