Re: Betty C.

January 28, 2004

SUe

Thanks for your input. We haven't actually told him anything yet but he is

very intelligent and knows something is up with me. It is so difficult to

know what the right thing is to do. He has been through so much already I

don't want to add to his devasatation.

Thanks

Betty

Betty C.

> In a message dated 1/28/04 12:28:48 PM Eastern Standard Time,

tabby2@...

> writes:

>

> << he is an

> active hockey player, golfs, and plays in 2 school bands.....how would he

> react to this , how would it change his life, how could he carry

on?????? >>

>

> There is no telling how he would react to this, but by having him tested

and

> giving him the facts he can make the best decisions for himself. Have you

> asked him how he felt about being tested? You would be able to start

letting him

> know some of the information at that time. He may not make the decisions

you

> would want him to, but you also cannot live his life for him. He is

almost

> an adult and needs to be treated this way. there are also major

reproductive

> issues to be concerned about, of which he needs to make informed consents

> about. you can probably expect a phase of denial. The only thing he is

doing that

> might affect him is the hockey, but he would have to make this decision.

And

> keep your hopes up......maybe he doesn't have it all!!!!!! This I am

praying

> for you and your family, Betty.

>

> Hugs,

> Sue

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

January 28, 2004

Hi Betty,

You and your family have been through so much. What a hard thing to have to

face. For an adolescent, who usually have such senses of invincibility and

immortality, it would be so devastating.And he may in fact deny that it is all

anyway.

I don't know what the answer is here. I know that you want to be sure that he

is safe and not doing something that puts him in further harm's way. As Sue

said, he is almost legallly an adult and lots of his decisions will be up to

him then. What does he think happened to his sibling? I must have missed part of

the story somewhere. Sorry. It sounded like he understood what is going on

with you. Does he understand that it is genetic? Does he see a geneticist or

other doctors for his EDS? I'm sorry that I am asking more questions than

answering them. Kids usually know so much more than we think they do. Are you

positive that he doesn't already know this in his heart and is trying very hard

to

forget it?

I hope that someone can help you with this andwish that I had had more to

offer you.

sorry. Take care,

January 28, 2004