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Re: from joyce---

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Hi Everyone,

I just wanted to say that I think that Joyce is a very brave woman.

She is dealing with probably the worst thing a mother could ever

have to deal with and she still has the courage and love of others

to try to warn us of the seriousness of the conditions we all deal

with.

I know how unpleasant and down-right scary it is to think that we

may have a potentially lethal illness, but as has been stated, the

statistics show that the mortality rate for them is very low.

However, the very nature of these conditions makes it obvious that

occasionally there will be fatalities.

The good news is that as the research is growing, more doctors are

being made aware of what to do and how to handle us. That

translates into fewer deaths.

When I was dx in '03, I was told flat out that I needed immediate

surgery. Not emergency, but nevertheless, immediate surgery, as I

was at a risk for paralysis or death if I had a fall, got a bump on

my head, got in a whiplash situation, or even coughed or sneezed too

hard! That was scary, but we need to know the truth. Sometimes the

truth makes us uncomfortable or afraid, but still we need to know it

to make the right choices.

I had my surgery 3 months later. I'm not much better, but at least

I'm out of that danger.

The point of what I'm trying to say is that we, especially those of

us that are adults, must realize that these are serious conditions

we are dealing with. When one among us has the courage to come

forward and share such deep pain to try to warn us, we should

embrace her and thank her for her courage and concern for us.

Thank you Joyce, from the bottom of my heart. I know that you are

trying to raise awareness of this, as I would if I lost my daughter.

I admire and appreciate what you are doing.

God Bless You and Yours,

Suzette

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