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…
Michael, my husband, Aged 66 was diagnosed with Myelofibrosis in March 2014 He had a Bells Palsy episode in 2012 and was admitted to hospital as we thought it was a stroke and he has had headaches ever since. The hospital said he had a low platelet count and mentioned Thrombocytosis in a letter to…
My name is Sally and my MPN story began in April 2012 when a visit to my GP resulted in a referral to the haemotology department at my local hospital and my first, (but far from last,) bone marrow biopsy. Myelofibrosis was diagnosed and I was sent home with leaflets and the knowledge this was…
I am a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET. I started in the rubber industry in 1963 after leaving school and worked for a tyre company in the west of England, . I stayed in the rubber industry another 15 years and then…
Having previously lived in Spain, I am now resident in a beautiful part of France, with views of the Pyrenees in the Ariege. We had just signed for the house, and returned to Spain, when I started to get incredible itching after a shower. I knew our local doctor would say: ‘Well, it could be…
At 59 I was looking forward to retirement and all I was going to do. It was summer term at the college where I worked and we were busy doing invigilating for all the exams. Three times in a week my ankles swelled up after standing for long periods. The third time it happened I…