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Re: my editor's response

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Gretchen,

Sounds a bit closed-minded but, as you said, you've just been working with her a

month. Perhaps you should give this time...even our group was about 85/15 in

its responses. I'm sure if you could convince her to take a poll of afflicted

and suffering individuals to

educate her further in acceptable editing/writing terminology, this group would

be more than happy to participate :)

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Hi Gretchen:

I do understand what your editor is saying. We really do not want to

sugarcoat how harsh CMT can really be. Yes we are afflicted and yes we do

suffer.

I think the key is how do we behave each day. Do we decide to sit on a pity pot

and p--s & moan each day. or do we maintain a positive mind and actions.

If I want to feel miserable and lousy all I have to do is sit around and think

only about myself. I call this getting behind enemy lines (in my own head). I

choose to get out of myself and see if I can help someone else who may be having

a bad day. Coffee shops are great for giving and receiving help from each other.

To paint a rosy picture of CMT would not do us any justice to the outside world.

People need to know how serious CMT is. One hell of a neuromuscular disorder. It

is also the most common form of neuromuscular diseases.

But even with that, I have yet to meet a person who knew what CMT was. I have

had to educate half or Port Elgin. On top of this the medical community in

general is not very well educated when it come

to CMT. God, there have been several horror stories this week alone. We need

support from the outside world. Awareness and research is paramount to all of

us.

At the end of the day if we need to use afflicted and suffering to describe how

CMT can affect someone I think that is OK. But it is equally important to show

others that you can still be positive and upbeat in spite of such a harsh

disorder. You may have to cut your editor some slack????

Personally, I think your writing skills are fantastic and it would be a shame if

you decided not to contribute to hnf-cure.org.

Best regards,

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