i was diagnosed with MF about a year ago after a routine blood test showed anaemia. After many tests and many delayed appointments speading over 8 months the diagnosis was finally MF. I believe i'm high risk - i'm sure i've seen that somewhere, and that's possibly because i'm 72. At the time of diagnosis i didn't feel there was anything wrong with me at all, and had no effects. Since then, and after a year on ruxolitnib, the only real symptom i get is tiredness in the legs when walking uphill. I walk 2 miles (on the flat!) every day, and at the weekends often 4-8miles with no problem. I understand the full & frightening implications of a transplant, but i have a rare type that they can't match, so really i'm glad i don't have to make that decision. I've had 3 transfusions since last Feb, 2 prior to going skiing (i'm a ski instructor working in europe for several weeks a year ) and the last one, mid august, before a 2 week holiday to Africa. These were to maximise energy for the trips -  i don't feel i need another one right now.

i've been told i have a 50% chance of surviving 4 years, and that 6-7 years is the best to hope for yet i now hear of people who have lived 10-20 years with MF. I'd like to know more about that and if you're one of those people i'd really like to hear from you..

Alan