Neal: Happy With CML

[Guest guest]

Hi Neal.

I hear you - but I do not have the time to be angry about CML.

I am just too busy. I just get on with it. As long as the condition is managed

as are the side effects

and I can tell you as Lottie, Zavie, Bobbie and my team in training fund raising

mentor Virginia, They can testify that I have had the bucket load.

Plus nearly losing my life twice. Great tonic for enjoying it now.

I do not even ask and actually never have asked the question about why I was the

random person.

This is my take. (no scientific or medical knowledge)

I obviously had some weakened genetics and was struck down by a virus that

weakened my immune system.

I had thru my life quite alot of viruses. Glandular Fever, a flu like no other

which caused a Menieres condition;

and another virus that no doctor could work out what it was - but over a few

months disappeared.

If it really is environmental - and it could be of course - then you would think

that there would be a spike of

CML. I live on a rural property, have own water supply. Could be farm chemicals

and vet chemicals or fencing

paint etc.

My GP (Dr who has a general Practice- not my haem. specialist) and I am the only

person out of 1300 hundred patients

who have CML. If it was environmental I would of assumed that there would be

many more.

There is one other person who has glivec medication but for stomach tumours

being GSI.

In Australia there are only about 1400 people living with CML. When I was

diagnosed there were only 300 and that was 3 1/2 years ago.

That is not more people being diagnosed. That stat people is more people living

with drug management successfully.

How fantastically rewarding is that.

I do not give back I give forward. I want people to live by example and I am

out in the community everyday - that one can live well

with a condition where there is no cure. I want people to know that one can have

a full life and whatever that life is for them.

Good reason to fund raise for CML medical research - we need those dollars.

I look at my mentors that I mentioned above and their resolve. I look at my CML

Aussie friends, and and the

way they conduct their lives. I know won't mind me giving her

background. Diagnosed with CML while pregnant.

Could not go on glivec of course but had interferon. Imagine interferon being

pregnant, morning, everyday sicknesses, CML

% climbing. A little girl was born. is such a young woman with 4 little

people in her care. She home schools, she

interacts with larger communities and she is in no doubt MY CML HERO. Her life

is her children and you have never seen

such joy in a family - it shines out of them.

Keep Well, keep strong, as we all need to be with a long life living in the

shadow of CML.

We all have to be mentally strong not to let the condition overpower our

resolve.

Thinking of you all

Sue

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