Myloid Fibrosis

Wow, this is very rare and complex condition. I was studying about it. I find it dangerous because it is a progressive disease, there is no cure and the treatment consists of controlling the symptoms. It is so progressive that it may lead to acute lymphocytic leukemia.

Has anyone around you been diagnosed with this disease?

I was just diagnosed with myleofibrosis last week, since then I've been trying to learn all I can about it, needless to say the more I discover the worse I feel :'( . I suppose what I find the most difficult to deal with is my doctors attitude of 'lets monitor your blood for awhile longer before we decide on a course of action' I am not one to sit around and wait for the worst, I'd much rather fight it head on and am willing to try anything.

I was diagnosed with Myloid Fibrosis 7 years ago and hve been on Agrlyn for over 6 years with no side effects at all. Still very anemic but platelet count is normal. It was 1.1 Million when diagnosed.

**edited by moderator**

? My cousin was just diagnosed with myloid fibrosis. I am trying to learn about this horrible disease. is there a cure. What can be done for him. 8-|

My father was diagnosed with this disease about 11 years ago. He was given a life expectancy of 5 years.

It all started when his spleen enlarged.

He is 75 now and basically he has had blood transfusions to stabilise him.

The transfusions were about 6 weeks apart to start with and his life was quite normal.As time progressed the transfusions got more regular and now as we speak he is in a room in a hospital having a small amount of platelets every day.

The condition has developed in to acute Leukaemia so he cannot come in to contact with any viruses as he has no immune system. The care he is having is called barrier nursing.

I have heard there is a experimental treatment using electricity I can try and find out the name of it if anyone is interested.

My father hasn't had this the doctors didn't want to try it on him I think he was a little too feeble.

I presume my father only has a few months left but what I can tell you is this.

Until recently he could lead a full life.

He has never suffered with his mind.

Even now he isn't in pain his main complaint is he has no appetite (His hobby was eating)

My father isn't and never has been a positive person he was given 5 years but survived up to 11 so far. Looking back the mistake my father made was he stopped living when he was diagnosed there is so much life he could have lived but as I said he isn't a very positive person(Grumpy old man comes to mind)

I am in a very sad position at the moment because I don't think he has long left but the biggest part of that sadness is that my father died 11 years ago.

I hope you are successful with your quest to get well but please take my advice DONT stop living enjoy your life to the full

God bless